RDI Council Election 2026 - Candidate profiles
There are 13 candidates in the 2026 RDI Council Elections. You can read their profiles below:
Eda Selebatso – Botswana Organisation for Rare Diseases (BORDIS)
David Sanchez – FEDER
Christina Raj – Center For Ichthyosis Related Members India Foundation
Trudy Nyakambangwe – Rare Disorders Zimbabwe
Ida Mirković Knaus – Rare Diseases Croatia
Nicole Millis – Rare Voices Australia
Tao Ma – Illness Challenge Foundation
Diana Danielle Kwast-Hoekstra – Unlimited Forward Foundation
Kirsten Johnson – Fragile X International
Monica Ferrie – APARDO
Daniel de Vicente – Eurordis
Christhyl Lysett Ceriche Ceriche – Dimus Chile (Muscular Dystrophies)
Maria Marta Bertone – ALIBER
Maria Marta Bertone
ALIBER
My advocacy journey began as a mother. My son was diagnosed with a rare and severe epilepsy and underwent epilepsy surgery in early childhood. Navigating the healthcare system, searching for information, and connecting with other families showed me both the challenges faced by people living with rare diseases and the importance of patient-led support and advocacy.
Since then, I have dedicated my work to improving access to care, information, and support for families affected by rare and complex epilepsies. I am the President of FundHemi, a patient organization that supports families across Latin America, and Vice President of ALIBER, the Latin American Alliance for Rare Diseases.
I have been involved in national, regional, and international initiatives focused on patient engagement, health policy, and equitable access to healthcare. I also participate in the Rare Diseases International Latin America Task Force and collaborate with organizations working to strengthen the voice of people living with rare diseases in decision-making processes.
I strongly believe that lived experience is a valuable form of expertise and that meaningful patient involvement is essential for building more equitable, responsive, and person-centered health systems.
I would like to contribute to RDI by bringing both a lived-experience and a regional perspective from Latin America. Through my work with FundHemi, ALIBER, and regional advocacy initiatives, I have seen how patient organizations can help transform individual experiences into collective action and policy change.
I hope to support RDI’s efforts to strengthen meaningful patient engagement, promote collaboration among patient organizations, and ensure that the voices of people living with rare diseases are represented in global discussions and decision-making processes.
I am particularly interested in contributing to initiatives related to health equity, access to care, capacity building, and the implementation of international policy frameworks that can improve the lives of people living with rare diseases. I would also like to help strengthen connections between RDI and organizations in Latin America, including ALIBER, fostering greater participation from the region and facilitating the exchange of experiences, knowledge, and good practices.
Most importantly, I would like to contribute as a collaborative and committed advocate, helping ensure that people living with rare diseases are not only consulted, but meaningfully involved in shaping the policies and decisions that affect their lives.
International collaboration and advocacy are essential because many of the challenges faced by people living with rare diseases are shared across countries. By working together, we can learn from successful experiences, strengthen patient voices, build capacity, and advocate more effectively for policies that improve access to care, diagnosis, treatment, and social support.
Through my work in epilepsy advocacy, I have seen the value of global initiatives such as the WHO Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP). One of my priorities has been helping translate global commitments into concrete actions at national and regional levels through partnerships among patient organizations, healthcare professionals, governments, and international organizations.
International collaboration also helps ensure that regions such as Latin America are represented in global discussions and that local realities inform international policy development. As Vice President of ALIBER and through my participation in regional and global advocacy networks, I have worked to foster these connections and promote meaningful patient involvement in decision-making.
I believe RDI plays a unique role in bringing together diverse voices and transforming shared challenges into collective action and global impact.
Candidate Video
Christhyl Ceriche
DIMUS Chile
I’m a Chilean patient advocate living with LGMD, Board Member of Dimus Chile, and Global Co-Chair of Oracle Diverse Abilities Network (ODAN). I’m actively involved in the rare disease community at both national and international levels, working to amplify patient voices, promote inclusion, and help create spaces where lived experience is recognized as a key part of healthcare decision-making.
At Dimus Chile, I participate in initiatives focused on improving the quality of life of people living with muscular dystrophies through awareness, advocacy, community support, and patient engagement. Internationally, I contribute to global initiatives and serve on the LGMD Community Advisory Board, where I bring the patient perspective to discussions around unmet needs, quality of life, and access challenges.
Professionally, I work at Oracle as an HR Business Analyst, specializing in people analytics and crossfunctional collaboration. This experience has strengthened my skills in governance, communication, strategic planning, and working within multicultural environments. Through ODAN, Oracle’s employee resource group for people with disabilities, I also advocate globally for workplace inclusion and accessibility.
My advocacy is driven by the belief that patients should not only be represented, but meaningfully included in shaping policies, research priorities, and healthcare systems.
I would like to contribute to RDI by bringing the perspective of Latin American patients and advocates, particularly from communities that are often underrepresented in global conversations. I believe my experience across patient organizations, international collaborations, and corporate environments allows me to contribute with both lived experience and strategic thinking.
I would support RDI’s mission by helping strengthen patient engagement, fostering collaboration across regions and stakeholders, and promoting inclusive and accessible advocacy spaces. I’m especially interested in contributing to initiatives related to awareness, equity, patient representation, and community empowerment.
Professionally, my background in analytics, governance, and coordination can also support strategic decision-making, communication, and collaborative work within multicultural teams. I value transparency, accountability, and long-term strategic impact. Most importantly, I want to help ensure that patients and families feel heard,
International collaboration and advocacy are essential for the work because rare diseases affect small populations in every country, making it difficult for any one nation to address these challenges alone. By working together across borders, countries, researchers, healthcare providers, and patient organizations
can share knowledge, medical research, treatment methods, and data. This cooperation helps speed up
the discovery of new therapies and improves diagnosis and care for patients worldwide.
Advocacy is equally important because people with rare diseases are often overlooked in healthcare
policies due to the small number of patients affected by each condition. International advocacy raises
awareness among governments, policymakers, and global health organizations about the urgent needs of
rare disease patients. It encourages the development of better healthcare systems, increased funding for
research, affordable medicines, and equal access to treatment.
Furthermore, global collaboration gives patients and families a stronger collective voice. It helps reduce inequality between developed and developing countries by promoting fair access to healthcare resources. Through international partnerships and advocacy efforts, Rare Diseases International can influence global health policies and ensure that no patient is left behind, regardless of where they live.
Candidate video
Daniel de Vicente
EURORDIS – Rare Diseases Europe
My name is Daniel de Vicente, and I am living with ASMD (acid sphingomyelinase deficiency), an ultra-rare genetic disease. I was diagnosed at the age of 36 after living with symptoms since birth. That long diagnostic journey exposed me to the reality faced by millions of people living with rare diseases worldwide: uncertainty, limited information, delayed diagnosis, and barriers to appropriate care.
In 2019, together with my sister, who also lives with ASMD, I co-founded the ASMD Spain Patient Association. As President, I led the advocacy efforts that resulted in the inclusion of the first and only disease-specific treatment for ASMD in the Spanish public healthcare system in 2024. This experience confirmed for me that meaningful change depends on evidence, collaboration, and persistence.
I am also a pharmacist with more than 25 years of professional experience, which allows me to combine lived experience with technical understanding of medicines, regulation, and access. Since 2020, I have served on the Board of Directors of FEDER, the Spanish Rare Diseases Federation. I am also Research Liaison Officer at INPDA and a former member of the EURORDIS Board (2023–2026), with which I remain strategically engaged. In addition, I contribute as a patient expert to the EMA and the European Critical Medicines Alliance.
These experiences have taught me that rare diseases cannot be addressed through isolated local efforts or through global strategies disconnected from people’s realities.
I would like to contribute to RDI at a pivotal moment for the rare disease community. The WHO Resolution has created global momentum, but major challenges remain: uneven government action, growing regulatory complexity, rapid therapeutic innovation, and health systems under pressure. In this context, RDI’s role in connecting organizations and amplifying shared priorities is more important than ever.
As someone living with a rare disease, with a professional background in pharmacy and proven experience in advocacy and public policy, I can bring a combination of perspectives that is both strategic and practical. I understand the patient reality, I can engage with technical and regulatory discussions, and I know how to work collaboratively with institutions, clinicians, industry, and civil society.
In practice, I would support organizations advocating for recognition and implementation of the WHO Resolution, drawing on Spain’s experience; help patient groups in different countries strengthen their responses to local challenges; translate regulatory and policy complexity into practical language and strategy; and serve as a bridge between European technical experience and the priorities identified by organizations from all regions. Above all, I want to contribute my time, work, and commitment so that the voices of organizations with fewer resources are heard and reflected in global decision-making.
Rare diseases do not respect borders, but health systems do.
And while we may be vulnerable when we act alone, together we become far stronger.
I have seen the power of collaboration in very different settings. The international Niemann-Pick registry connects organizations in more than 15 countries, because no single country has enough patients to generate meaningful data on its own, but together we do.
In my collaboration with the European Medicines Agency on patient experience, the best decisions emerged when perspectives from multiple countries were brought into the discussion. The same is true at Rare Disease Conferences and in international working groups: the most effective solutions are created when we share knowledge across borders, not when each country works in isolation.
International collaboration makes three critical things possible.
First, it could prevent duplicities. For example, if one country spent three years developing a national plan, another can do it in one by learning from that experience.
Second, it amplifies and coordinates our impact with governments.
Third, it multiplies our limited resources. Sharing data and good practices helps to save time and resources.
The WHO Resolution was a triumph of international collaboration. Now comes the harder part: turning that recognition into real change for patients. That will only happen if we work together, learn from one another, and refuse to accept that a postal code should determine a patient’s future. International collaboration is the most powerful tool we have to drive solutions for rare diseases.
Candidate video
Monica Ferrie
APARDO
I’ve been advocating for the rare disease community locally in Australia and regionally across the Asia Pacific for almost 10 years. Working with and for our community to improve quality of experience in healthcare and quality of life overall means engagement with all stakeholders. This has involved people living with and impacted by a genetic or rare diagnosis or no diagnosis at all, community leaders, policy and decision makers, industry, health professionals, researchers, educators, disability and mental health experts and others who can make a difference. Sometimes my role has been to listen and then represent, sometimes it has been to clear a path so people and families can represent themselves with my support if it’s needed. I have always been driven by a belief that clearing a space for people to share and use their voices and experience is the most powerful pathway to change. No-one knows everything but everyone has a right to be heard and to create the future for themselves and their families. I aspire to a healthcare system for everyone that is preventative and predictable, for communities where people and families are connected, have choices and control over decisions. My advocacy in Asia Pacific centres around co-designing local solutions that will serve local communities while seeking opportunities to leverage regional lessons and learnings.
My strengths are in governance, strategic planning, relationship management and taking complex issues apart to find the small steps of solution towards an overall large outcome. I would like to continue to use these strengths to work with the RDI Council and Team to progress our rare disease community agenda. The diversity of the Asia Pacific region ensures that I also bring a range of types of expertise and experience and the flexibility to work with different stakeholders in countries and regions that are from low-, middle- and high-income areas. I also bring knowledge of emerging technologies and am involved with many projects exploring increased access to genomic technologies including newborn screening, reproductive carrier screening, genetic testing, building and using genomic data to increase diagnostic yields, developing evidence for HTA processes, varying regulatory requirements, and challenges for access to therapies across many diverse countries. My experience in resource-different ecosystems is also valuable to RDI when thinking about care pathways and standards. I am also committed to the time and energy required to serve as an RDI Council member in supporting the organisation.
What is super clear to us all in our many cross-border, cross-region conversations is that we all have the same challenges. What varies enormously are the resources and the policy appetites to be able to have any impact. International collaboration provides the opportunity to define and measure the problems and to create an understanding of what success would look like across a range of ecosystems. We know there is not a one-size-fits-all answer, but there are models across comparative countries that we can learn from. There are mistakes and successes—both can teach us. International advocacy provides an opportunity for local action. The 2025 WHA resolution resulted from significant global advocacy and has already provided leverage at the local level for countries, local programs and research to launch action and activities, expedite local rare disease plans and discussion forums, policy dialogue and regional progress.
Candidate Video
Kirsten Johnson
FraGile X International
I am the parent of two adults who live with Fragile X Syndrome and am a professional musician. I have served on the Council of RDI since 2023 and would value being elected for a second term. On the Council, I have served as Chair since August 2024 and have led on an extensive Governance review. Under my
leadership, the Council has become more globally representational and has agreed to hold in 2026 our first Members Meeting outside Europe. I have been on the board of EURORDIS since 2022, and in that capacity have been involved in co-chairing the Mental Health & Wellbeing Partnership Network, and serving on the EURORDIS Newborn Screening Working Group, as well as being an advisor on Screen4Care. I am a Commissioner on the RDI Lancet Commission for Rare Diseases, contributing to the Social Justice and Clinical Care working groups. I am the President and one of the Founders of Fragile X International. In addition, I have successfully led the campaign to change the name of the FMR1 gene, removing offensive terminology, and on the introduction of the term Fragile X Premutation Associated Conditions (FXPAC) which is now accepted internationally. I have co-authored a series of articles for leading scientific journals, including one in which we call for holistic care for Fragile X Syndrome, and two EURORDIS reports on the psychological impact of rare conditions and what good psychosocial care looks like for our community.
If re-elected to the Council of Directors, I would stand again as Chair to provide continuity of leadership in this time of CEO transition. RDI is a global organisation which represents all of those living with rare conditions anywhere in the world, and I would continue to support our development of regional networks in Africa, the Middle East and other regions through our recently-launched Regional Engagement Framework, so that we work collaboratively towards a Global Action Plan which is relevant to each of our members in all areas of the world. We have started work on a Global Rare Disease Observatory, and I hope to continue to support staff in this development and implementation, so that we can measure progress over time.
I am willing to give of my time to support the team and the various projects, including next steps in launching the website for the Global Network for Rare Diseases; re-establishing our Policy Committee with member involvement; planning the launch of our Youth Leadership Academy for 2027, establishing an alumni program for our current cohort, and launching the applications for our next group of young leaders; supporting the staff team as they develop work on innovative financing and access to therapies; and providing leadership to the Council so that we work effectively in achieving RDI’s mission and vision. I have extensive experience in speaking, chairing, leading initiatives and governance. It would be a privilege to continue to serve RDI and our members.
With 7000+ rare conditions, we risk failure if we do not collaborate. We are far more able to achieve change if we work collectively and collaboratively. RDI is the global leader in rare diseases, and the adoption of the World Health Assembly Resolution for Rare on May 24, 2025, with a coalition of 275+ stakeholders and the support of 41 Member States evidences what can can be achieved by working together. None of our disease-specific organisations can achieve what RDI does on the global stage. None of our national or regional organisations can have the impact that RDI has internationally. The U.N. resolution on rare diseases in 2021 was a benchmark of what needs to be achieved for all those living with a rare condition. We are now building on that, by first of all having a health-specific resolution through the WHO. Further work now needs to be done, through international collaboration, of building on other aspects of the U.N. resolution so that we have true social justice in each part of our lives, that there is equity 24/7 and that everyone with a rare condition not only has access to care and treatment but also to education, housing and employment. Last, but certainly not least, we need to advocate collectively, and internationally, against stigma and discrimination. Without addressing the multiple layers of vulnerability our communities face, and the layers of stigma and discrimination, we can not achieve equity for all. Together we are stronger.
Candidate Video
Diana Kwast-Hoekstra
(Un)Limited Forward! Foundation
I live with rare adrenal and lung-related conditions myself. This experience has shaped who I am as an advocate. I know how important it is to be recognised, to receive reliable information, to access the right expertise and to have care that is coordinated around the person rather than around separate conditions.
My advocacy is also shaped by my nursing background. Earlier in my career, I worked with children with rare and complex conditions and their families. This taught me how deeply a rare disease can affect not only the person living with the condition, but also parents, siblings and other loved ones. I recognise the emotional, practical and organisational burden that families often carry.
This is why I founded Stichting (On)beperkt Vooruit!, an independent Dutch ANBI foundation for people living with rare diseases and/or multiple long-term conditions. Through my foundation and my work with IRDiRC, GNNRD, EURORDIS, ENDO-ERN, Orphanet, EMA and EUPATI-related activities, I connect lived experience with nursing, scientific, HTA, regulatory and policy knowledge. I also contribute to mentoring and education for fellow patient experts and advocates, helping strengthen meaningful and confident participation in research, policy and care improvement.
I would like to contribute to RDI by helping turn lived experience into collective influence, practical support and strategic action. RDI’s mission to be a strong common voice for Persons Living with a Rare Disease and their families resonates deeply with me, but I also see how important it is that this voice is supported by good governance, evidence, member empowerment and international collaboration.
My contribution would be strongest in four areas. First, I can help bring the perspective of people living with rare diseases and complex multimorbidity into discussions on care, access, self-management and care coordination. Second, I can support knowledge exchange and capacity building for patient experts and advocates, including mentoring, education and confident participation in research, HTA, policy and care improvement. Third, I can help mobilise a broad international network of healthcare professionals, researchers, patient organisations, HTA experts and regulators through my work with IRDiRC, GNNRD, EURORDIS, ENDO-ERN, Orphanet, EMA and EUPATI-related activities. Finally, I bring governance and senior management experience from healthcare, education and patient advocacy.
As a Council member, I would aim to serve RDI as a whole, with independence, careful preparation, humility and a collaborative focus on equity and better quality of life.
People and families become vulnerable when knowledge, care, research, support and policy remain disconnected.
From my own life and from my earlier nursing work with children with rare and complex conditions, I know that rare diseases affect far more than a diagnosis. They affect family life, education, work, mental wellbeing, participation and the ability to navigate health and social care systems.
No single country, organisation, discipline or perspective can solve these challenges alone. Expertise is scarce, evidence may be limited and patient communities are often small or dispersed. Progress depends on bringing together persons living with rare diseases, families, patient organisations, healthcare professionals, nurses, researchers, regulators, HTA bodies and policymakers, while keeping patient voices independent, transparent and central.
My experience in European and international collaboration, including ENDO-ERN, EURORDIS, EUPATI and IRDiRC, has shown me how powerful shared learning across countries, health systems and stakeholder groups can be. For me, advocacy means turning lived experience into recognition, fair decision-making and practical action. RDI’s global role is essential because it can unite diverse voices into a strong common voice for Persons Living with a Rare Disease worldwide.
Candidate Video
Tao Ma
Illness Challenge Foundation
I have worked in the rare disease field for eight years. I hold an MBA from Peking University and was a Hubert H. Humphrey Fellow in public health policy at Emory University. Currently, I serve as General Secretary of the Illness Challenge Foundation (ICF), a national foundation in China. Under my leadership, ICF has raised over USD 25 million and directly supported more than 30,000 patients with rare diseases and their families.
Our most practical work is solving drug access in complex environments. My main achievement is helping to launch regional co-payment models for orphan drugs. This model brings together government insurance, charity funds, and commercial insurance to help thousands of families afford expensive treatments. I also focus on capacity building for smaller patient groups, training them to collect patient data and turn it into clear evidence for policy changes. I believe in practical cooperation, and I have a proven track record of turning frontline challenges into real, sustainable impact.
As an RDI Council Member, I will bring my current leadership experience from the RDI WHA Asia-Pacific Steering Committee to deeply connect our regional progress with global governance, focusing on three areas.
First, I will leverage my position to drive RDI’s World Health Assembly (WHA) advocacy campaigns more strategically. Having been directly involved in regional planning, I want to help RDI translate global milestones into national policies, ensuring the Global Action Plan works effectively on the ground in the Asia-Pacific.
Second, I will bring China’s localized experience to the global stage while linking more than 180 Chinese rare disease patient organizations into RDI’s networks. This will expand our regional advocacy and build stronger cross-border patient alliances.
Finally, I will share ICF’s proven methods in building multi-stakeholder co-payment models. This provides RDI with a practical framework to help developing regions design innovative financing toolkits and improve market access for orphan drugs.
Rare diseases face the same problems everywhere: very small patient populations, a lack of local data, and high treatment costs. No single country can solve these issues alone. International collaboration is necessary to help patients get fair access to healthcare.
In my daily work at ICF and through global exchanges, I see that our local problems, such as slow diagnosis and difficult reimbursement, are very similar to challenges in other countries. International advocacy helps us learn from each other’s successful policies and transfer cross-border knowledge. It also gives the global rare disease community a unified voice to encourage companies to research new drugs and push governments for better policies.
My experience collaborating with public health leaders globally has taught me that we must share local innovations. International advocacy connects isolated local efforts into a larger, synchronized movement, making sure that where a patient lives does not determine whether they can access life-saving care.
Candidate Video
Nicole Millis
Rare Voices Australia
I’ve been the CEO of RVA since 2016. RVA focuses on systemic advocacy—rare disease (RD) policy, processes and systems. My systemic advocacy began as a mum in 2008, successfully advocating for access to treatment for my son who lives with a rare disease.
Under my leadership, RVA led the collaborative development of the National Strategic Action Plan for Rare Diseases, the first nationally coordinated effort to address rare disease. Since then, RVA has co-designed key policy initiatives, including Australia’s Top 10 Rare Disease Research Priorities, Recommendations for a National Approach to Rare Disease Data, the Rare Disease Disability Toolkit, and was a consortium partner on the project that led to Australia’s first-ever National Recommendations for Rare Disease Health Care.
RVA has established the Australian Rare Disease Research Network and is collaboratively developing the RARE Portal. RVA facilitates the biennial National Rare Disease Summit, and our political influence saw us lead the reformation of the Parliamentary Friends of Australians Living with a Rare Disease, which hosts the annual Rare Disease Day Parliamentary Event. RVA is the national alliance for rare disease organisations representing Australia.
I am the consumer nominee on the Life Saving Drugs Program Expert Panel and sit on the HTA Consumer Consultative Committee. I was previously a member of the HTA Review Implementation Advisory Group.
As RVA CEO, I have an extensive understanding and knowledge of the rare disease landscape in Australia. I have demonstrated leadership in working within policy and political contexts to achieve the best outcomes for Australians living with a rare disease. My personal experience means I understand that rare disease impacts every facet of a person’s and family’s life.
Under my guidance as CEO, RVA has proven itself as the national peak body for Australians living with a rare disease. RVA’s influence politically and with key rare disease stakeholders has played a pivotal role in Australia becoming a global leader in rare disease.
I would like to use my extensive knowledge and experience in rare disease advocacy to contribute to the global community and RDI’s vision. I recognise the importance of a strong, common voice both nationally and globally.
With WHO’s impending 10-year global action plan on rare diseases, I believe the global rare disease community is at an important inflection point, with a significant opportunity to improve equity.
The importance of global leadership and coordination cannot be underestimated. “State, national and international partnerships” is a critical enabler of Australia’s National Strategic Action Plan for Rare Diseases.
There are many commonalities across international rare disease strategies and plans, including objectives related to prevention, early detection and screening, accurate and timely diagnosis, access to care, and clear care pathways. There is significant benefit in the global community leveraging shared learnings.
International collaboration and advocacy are important because of the small populations and complexity involved in rare disease. Global collaboration and the sharing of knowledge and expertise are often required to ensure the best outcomes for people living with a rare disease.
At RVA, we have identified that it is far more strategic to focus on the commonalities of rare disease than to engage in individual advocacy for the more than 7,000 different rare diseases.
When engaging with policymakers, I have consistently been told that addressing rare diseases is “too hard.” At both national and global levels, we must engage in solutions-oriented approaches and build upon existing strengths. The international community is an existing strength that should continue to be leveraged to drive equity for people living with a rare disease globally.
Candidate Video
Ida Mirković Knaus
Rare Diseases Croatia
Driven by the personal experience of growing up with a brother living with a rare disease, my path as an advocate began in childhood. Witnessing the social stigma and harsh judgments he faced, I felt a deep responsibility to educate others, believing that understanding is the first step toward empathy. This early refusal to “look away” from injustice later shaped my professional identity, leading me to pursue social work. Today, my advocacy is both a personal commitment, professional mission and an academic pursuit. I am currently a PhD student in Social Work and Social Policy, focusing my research specifically on the
stigma associated with rare diseases. In my role at the Rare Diseases Croatia (Croatian Alliance for Rare Diseases), I bridge the gap between grassroots activism and systemic change. My journey has evolved from a sister’s protective instinct into a career dedicated to raising awareness, influencing policy, and ensuring that the voices of the rare disease community are heard and respected. I bring a unique blend of
lived experience, academic rigor, and professional expertise to the global effort of improving lives through dedicated advocacy.
My contribution to RDI is rooted in a lifelong mission that merges personal experience with professional expertise. As a sister, daughter, social worker, and researcher, I bridge the gap between the lived realities of “rare families” and the evidence-based world of social policy. I am especially committed to amplifying the perspective of young people, who are often sidelined in professional circles despite being the most innovative problem-solvers in the community. Their firsthand resilience is vital for future-proofing advocacy. Furthermore, I bring a strategic focus on the Balkan region, a voice that is frequently underrepresented in global discussions. Leveraging my strong regional connectivity, I aim to ensure that the unique challenges and insights from our corner of Europe are integrated into the international
dialogue. My deep understanding of psychosocial dynamics and legislative frameworks allows me to navigate complex systems while remaining human-centric. Characterized by unwavering persistence, I do
not retreat from systemic hurdles. By joining RDI, I can offer a diverse toolkit of academic rigor and regional leadership, fueled by a tireless drive to turn personal insights into global practices that yield lasting results.
In my opinion, international collaboration is the cornerstone of progress in the rare disease field, serving as an amplifier for voices that are often marginalized at the national level. By uniting across borders, it transforms individual struggles into a collective force, revealing the true scale and complexity of the challenges our community faces. Moreover, collaboration facilitates a crucial exchange of knowledge and
best practices. It allows us to analyze successful mechanisms in one region and adapt them to work effectively in another, preventing us from “reinventing the wheel”. This interconnection is what brings advocacy to the most influential tables where systemic change is decided. A prime example is the adoption of the WHA Resolution on Rare Diseases, where such milestones would not be possible without
a unified global front. Furthermore, international cooperation allows for the pooling of clinical data and resources, which is the only way to achieve the statistical power needed for breakthroughs in research and treatment. By linking advocacy with global collaboration, we ensure that no patient is left isolated by their
geography, turning a collection of rare conditions into a powerful, global movement for equity.
Candidate Video
Trudy Nyakambangwe
Rare Disorders Zimbabwe
I am Trudy Nyakambangwe, a PhD Social Scientist, qualified social worker, and founder of Rare Disorders Zimbabwe (RDZ). My advocacy journey began with witnessing the devastating invisibility of rare diseases in low-resource settings—families without diagnoses, children without support, and communities without hope.
As founder of Rare Disorders Zimbabwe and a rare disease advocate across Southern Africa, I would bring a critical and currently underrepresented regional voice to the RDI Council.
My primary contribution would be strengthening RDI’s African and Global South presence, connecting RDI with patient organisations, policymakers, and community networks across the region that remain largely outside global rare disease conversations.
Through RareCare Zimbabwe, I am building my country’s first rare disease registry, community screening systems, and telemedicine referral networks. I would contribute this practical, ground-level knowledge to RDI’s strategic planning, particularly around low-resource health system innovation and equitable access to diagnosis.
My roles with the International Gaucher Alliance, Global Genes Leadership Council, IRDiRC, and the African Coalition for Rare Diseases mean I already operate within the networks RDI seeks to engage. I would actively leverage these connections to grow RDI membership across Africa and attract partnerships aligned with RDI’s mission.
With a PhD in Social Sciences and deep experience in governance, I would contribute thoughtfully to Council oversight, ensuring RDI’s strategy remains person-centred, evidence-driven, and globally inclusive.
Rare diseases do not respect borders, yet the systems designed to address them remain deeply unequal. For countries like Zimbabwe, international collaboration is not optional—it is essential for survival.
Through the genetic clinic supported by Rare Disorders Zimbabwe, I have seen firsthand how the absence of diagnostic infrastructure, specialist knowledge, and data systems leaves families invisible within their own health systems. No single country can solve this alone. Partnerships with international laboratories, global rare disease networks, and NGOs such as Ihope Genetic Alliance are what make early diagnosis and coordinated care possible in low-resource settings.
Advocacy at the global level ensures that the lived experiences of patients in the Global South inform policy, research priorities, and funding decisions. Without African voices at tables like RDI’s Council, solutions will continue to be designed for well-resourced systems and poorly adapted elsewhere.
My work with the International Gaucher Alliance, Global Genes Leadership Council, and the African Coalition for Rare Diseases has shown me that collaboration accelerates change. Sharing data, pooling expertise, and amplifying advocacy creates momentum that no single organisation can achieve independently.
International collaboration transforms isolated struggles into a unified global movement, ensuring that no rare disease patient, regardless of geography, is left behind.
Candidate Video
Christina Raj
Center for ichthyosis related members india foundation
Christina Raj is a 58-year-old rare disease advocate from Hyderabad who has lived her entire life with an exceptionally rare combination of genetic disorders, including Harlequin Ichthyosis, ARCI, Epidermolytic Ichthyosis, and Weil-Marchesani Syndrome. She is believed to be the oldest surviving person in the world with this unique combination of conditions. Raised by her single mother, Dr. Victoria Ross, who was also her physician and caregiver, Christina overcame severe medical and social challenges from childhood. Despite being denied admission to several schools because of her appearance, she completed her education and earned an M.A. in English and a Postgraduate Diploma in Environmental Management from the University of Hyderabad. Christina built a successful career as a Training Consultant with renowned organizations. In 2017, worsening vision loss forced her to leave her profession after multiple eye surgeries. In 2010, she founded the CIRM India Foundation, a non-profit supporting people with ichthyosis and rare skin disorders. Today, the organization supports members across Asia and Africa. Christina also serves on international rare disease advocacy platforms, continuing to inspire others through resilience, service, and leadership.
As a member of Rare Diseases International, I would contribute by combining strategic leadership, global
advocacy, and stakeholder collaboration to strengthen the organization’s mission of improving the lives of people living with rare diseases. I would work to amplify patient voices, especially from underserved and low-resource regions, ensuring that policies and programs reflect diverse global needs. I would support partnerships with governments, healthcare institutions, researchers, and industry leaders to expand access to diagnosis, treatment, and innovation.
I would also focus on advancing awareness campaigns that reduce stigma and increase public understanding of rare diseases. By encouraging data sharing, cross-border research collaboration, and equitable healthcare policies, I would help accelerate progress toward faster diagnoses and more
accessible therapies. In addition, I would contribute governance oversight, transparency, and long-term strategic planning to ensure sustainable organizational growth.
My approach would emphasize empathy, inclusion, and measurable impact. I believe every person living with a rare disease deserves visibility, dignity, and access to quality care. Through collaborative leadership and advocacy, I would aim to help Rare Diseases International create stronger global networks and lasting change for patients and families worldwide. I would remain committed to ethical leadership, accountability, innovation, and meaningful community engagement globally.
International collaboration and advocacy are essential for the work because rare diseases affect small populations in every country, making it difficult for any one nation to address these challenges alone. By working together across borders, countries, researchers, healthcare providers, and patient organizations
can share knowledge, medical research, treatment methods, and data. This cooperation helps speed up
the discovery of new therapies and improves diagnosis and care for patients worldwide.
Advocacy is equally important because people with rare diseases are often overlooked in healthcare
policies due to the small number of patients affected by each condition. International advocacy raises
awareness among governments, policymakers, and global health organizations about the urgent needs of
rare disease patients. It encourages the development of better healthcare systems, increased funding for
research, affordable medicines, and equal access to treatment.
Furthermore, global collaboration gives patients and families a stronger collective voice. It helps reduce inequality between developed and developing countries by promoting fair access to healthcare resources. Through international partnerships and advocacy efforts, Rare Diseases International can influence global health policies and ensure that no patient is left behind, regardless of where they live.
Candidate video
David Sanchez
FEDER (Spanish Federation for Rare DiseaseS)
I live with retinitis pigmentosa, a rare disease that causes severe visual disability. This personal experience, combined with the support of my family, has deeply motivated me to work toward improving the lives of people living with rare diseases.
During more than fifteen years in the associative movement, I have developed skills in advocating for the rights of people with rare diseases. I am an active member of several associations, serving on their boards of directors and chairing three of them in Spain (Retina Murcia, FARPE and FUNDALUCE), which has enabled me to gain experience in advocacy, institutional relations and working with policy makers.
As a member of the FEDER Board of Directors since 2016, I have seen that the unity of the voluntary sector is a driving force for social change. Collaborative work multiplies results and enables us to reach more people.
Since 2020, I have intensified my international involvement; as a member of the boards of Retina International and ALIBER, I have participated in forums with affected people, professionals, researchers and public policy makers.
These experiences have strengthened my commitment to continue working so that no one is left behind.
RDI is a key global alliance in the defence of the rights of people with rare diseases. I would be delighted to contribute actively, bringing my knowledge, experience and commitment to bear in order to eliminate social discrimination and the persistent challenges we still face.
Over the last two decades, there have been remarkable global advances in the field of rare diseases, such as the recent Global Resolutions on Rare Diseases, which I have witnessed first-hand and in which our country has been significantly involved. However, there are still major inequalities in access to diagnosis, research remains insufficient, available treatments do not reach everyone, and the impact on mental health increases family difficulties; improving their quality of life is the main challenge.
I would like to join RDI to address these challenges faced by 300 million people worldwide every day, joining an excellent human team, working together, combining our efforts and contributing my experience at FEDER to reduce inequality and bring hope to the global rare disease community.
International collaboration and advocacy are essential to ensure that no one is left behind. The needs of this community are urgent and complex, and only through global cooperation can we move towards more equitable and accessible care.
Although there are significant inequalities between countries, everyone should have the right to appropriate diagnosis and treatment, regardless of their nationality. In Latin America, for example, it is not possible for families to access genetic testing free of charge, creating an unacceptable barrier. In the face of these challenges, international coordination is key.
At FEDER, working alongside the Ministry of Health at both national and international levels, we aim to set an example of effective collaboration and the promotion of policies that improve the lives of those living with rare diseases.
I would also like to highlight the support of Her Majesty Queen Letizia for both FEDER and ALIBER, acting as a voice and spokesperson for our requests, reaching the UNO and the WHO to generate political commitment and give us the visibility we deserve.
No country can face the challenges presented by these diseases on its own. Only by working together will we achieve the recognition, equitable early diagnosis and access to treatment that millions of people around the world deserve.
Candidate Video
eda Selebatso
Botswana organizations for rare Diseases (BORDIS)
I am a mother of 2 children living with rare diseases, and from this experience I established BORDIS 11 years ago. I have been with RDI since its inception. I am the chairperson of International MPS network, ISPEP board advisor, IRDiRC PACC member and International Gaucher alliance member.
Besides my advocacy work, I have worked in conservation, health and mining industries. I am from Africa where the health inequities are heart rending and worse for rare diseases. I will bring that diversity in lived experience and how to bring solution with limited resources. I am a specialist project manager, I hold an EMBA, PgD project management and BSc Biology and chemistry. I will bring my experience and skills in
organisational development, policy, research regulation, strategy and people management to move RDI forward.
Rare diseases are complex, less researched, and the patient numbers are limited per disease.
Collaboration is the best way to tackle them and bring solutions. This is also an opportunity to pool limited resources together to solve rare disease problems. Information and data are scattered, international collaboration makes access and sharing easier. International collaboration and advocacy also brings weight to the voice of the patients, opening doors to already existing structures like the UN and WHO levels, unlike if it was just an organisation from one country.