RDI Council Election 2022

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The RDI Council is RDI’s executive board.

The annual RDI Council election is now open.

All RDI FULL MEMBERS may vote. RDI Associate Members may not vote.

Check your organisation’s RDI Membership type (RDI Full or Associate Member): https://www.rarediseasesinternational.org/members-list/

TWO (2) seats are open for election. Please vote for TWO candidates

Each RDI Full Member organisation may vote once.

Voting closes on FRIDAY, 10 JUNE 2022, at midnight CET (Paris Time).

RDI Council Nominees 2022

Diego Fernando Gil Cardozo

Organisation: Federación Colombiana de Enfermedades Raras (FECOER)

Website: www.fecoer.org

  • Tell us a little about yourself and your experiences advocating for rare diseases.

I am an Industrial Engineer with a Postgraduate in Administration with more than 10 years of experience in Patient Advocacy for Pulmonary Hypertension and Rare Diseases (RD) in general. My experience includes the leadership of advocacy projects in public policy, education and awareness aimed at the inclusion, integration, and care of people with RD. Moreover, my experience includes collaborative and empowering work with more than 40 RD patient organisations. I also have experience with articulating initiatives with government institutions, insurers, providers, scientific societies, academia, the pharmaceutical industry, and multilateral organisations.

I am a Member of the National Board of Rare Diseases and a Technical Advisor to the Colombian Network for Access to Biotechnological Medicines (BIOREDCOL). Moreover, I am a Member of the Collaborative Global Network for Rare Diseases (CGN4RD). In terms of skills, I can interact in multi-ethnic and multicultural environments, I am proactive, with good management of interpersonal relationships, and a high sense of responsibility and teamwork.

  • How would you like to contribute to RDI?

I would like to contribute from my experience in empowering leaders of Rare Disease patient organisations and building collaborative work networks to improve the inclusion, integration, and care of our population. I could bring to RDI the perspective of work, challenges, and opportunities from Latin American countries. I can contribute from my vision and experience that I have had in the patient’s journey for more than 35 years and around 10 years in patient advocacy.

  • Why is international collaboration and advocacy important?

Although there are important advances in several countries to improve the conditions of Rare Disease patients and their families, we still have many global challenges and gaps to reduce between some countries and others. The experiences and the transnational work allow us to have a broader perspective, to refer to good practices to improve the conditions of access and equity. All patients from all countries are important, regardless of their nationality, gender, race, or social status; that is why it is necessary to continue advancing in strategies such as those that RDI leads around leaving no one behind.

Eileen Li

Organisation: Chinese Organization for Rare Disorders

Website: www.cord.org.cn

  • Tell us a little about yourself and your experiences advocating for rare diseases.

Since 2009, I have been an active policy advocator for rare diseases in China. I am currently leading the CORD Public Policy Center as a director. I am also the director of the Asia Pacific Alliance of Rare Disease Organizations (APARDO).

In the past years, I have successfully led the publication of 3 influential reports on rare diseases. The three reports have a significant impact on rare disease policy-shaping in China. Almost all government officials and academic researchers have read the 3 reports, and I have been invited to participate in nearly all regional rare disease policy-making seminars as a key opinion leader.

From 2014 to 2021, I worked for IQVIA (previously IMS health) as a partner in the management consulting business. I was the business leader of rare disease, pricing & market access CoE in IQVIA. Besides, I have successfully supported several speciality drugs launched in China, focusing on oncology and rare disease drugs. I have accumulated rich experience in the registration & approval, pricing, reimbursement access, and the go-to-market model of speciality drugs in China. I have also successfully supported several new rare disease drugs enlisted by China National Reimbursement Drug List (NRDL).

Before IQVIA, I worked with Novartis US. HE&OR team.

I obtained my M.S. degree in Social Policy from Columbia University: and my B.S. in Business Administration from the Renmin (People’s) University of China.

  • How would you like to contribute to RDI?

My experience in non-profit organizations, the pharmaceutical industry, and management consulting will contribute to RDI.

From the non-profit side, I would like to bridge the experiences and resources between RDI, CORD, and APAC rare disease communities. CORD has more than 50,000 rare disease patients registered in China, we are the go-to person for China’s rare diseases. On one hand, we want to bring more best practices from the global community, on the other hand, we are willing to share China’s practices with the global.

From the industry influence side, industry stakeholders are important in rare disease advocacy, and I will try my best to bridge RDI with more APAC healthcare industry stakeholders. I used to be the partner of IQVIA, and >95% of the multi-nation pharmaceutical companies and emerging biotechs were my clients, and I know their business needs well. I am also an active member of China’s healthcare industry associations.

From the RDI operation side, I believe my consulting professional experience can also help a lot. Project management, cross-function collaboration, data analysis, storyboarding, conference management, fundraising, …etc, I am very good at these tasks.

  • Why is international collaboration and advocacy important?

Rare diseases are not a regional issue, but a challenge globally.

From the patient side, we need to be connected, gather the voice, and find the solutions collectively. When we come together, we are not rare. Most Chinese patients have experienced the journey that when they were diagnosed, they thought they were the only unlucky persons, and there could be no treatment solution in China. But when they went to the internet, they found there were many other patients in the US and the UK, and their treatment solutions for sure inspired Chinese patients.

From the HCP side, they also need global collaboration to learn from each other, to maximize their knowledge and practice in rare diseases. This will significantly improve the diagnosis and treatment of rare diseases.

From the industry side, rare disease R&D and commercialization are a big challenge. Market failure is normal in this area, considering the limited patient size. International collaboration will extend the market boundary, providing more incentives for R&D and commercialization.

From the government policy-making side, international advocacy is important as well. Rare diseases put many governments in a dilemma of how to balance equality and efficiency? How to take care of the small group? In China, government officials have organized several travel programs to the UK (for the HST policy), and in Germany so they are trying to learn from other countries.

Rare diseases are a challenge globally, today I think no organization, no country can confidently say that they have conquered the diseases, or they have found the best practices. When we still face the challenge globally, we have the reason to be connected and believe that international collaboration and advocacy are important.

Yann Le Cam

Organisation: EURORDIS – Rare Diseases Europe

Website: www.eurordis.org

  • Tell us a little about yourself and your experiences advocating for rare diseases.

I am a patient advocate who has dedicated over 30 years of professional and personal commitment to health and medical research NGOs in France, Europe, the United States and now internationally in the fields of cancer, HIV/AIDS, and rare diseases.

I have three daughters, the eldest of whom is living with cystic fibrosis.

I hold an MBA from HEC Paris. I started in financial auditing and art production.

One of the founders of EURORDIS-Rare Diseases Europe in 1997, I became the organisation’s Chief Executive Officer in 2000. Today a respected and influential movement of 1000 member organisations, 400 volunteers, and 60 staff, which is shaping the agenda for the patient community, the multi-stakeholder dialogue, and the policy on rare diseases in Europe.

I initiated Rare Diseases International (RDI) in 2009, for which I was elected member of the Council and Chair of the RDI Advocacy Committee. I am a founding member of the NGO Committee for Rare Diseases (United Nations, New York) and its current vice-chair. I co-chair the Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease since its launch in 2018. I am a member of the World Economic Forum’s Health Stewards Board since 2020.

  • How would you like to contribute to RDI?

For the next 3 years, I would like to bring to RDI and its members my vision and enthusiasm, my experience of international advocacy across rare diseases, and my strategic or entrepreneurial skills at 3 levels:

1.Contribute to RDI development with a well thought strategic planning, smart collective reflection process, attention to synergies across activities and streamlining between advocacy/engagement/operations, to build a track record of achievements and gain a high level of appreciation by our members as well as stakeholder

2.Serve as Treasurer in the Council to ensure robust growth of the organisation with a multi-annual budget approach and diversified sources of revenues to enhance our independence, stability, and sustainability, including looking into innovative models and multi-stakeholder initiatives.

3.Propose to lead and support the RDI Advocacy Committee, with participative processes, to deliver on our priorities such as the upgrade of the UN Resolution, the promotion and adoption of the WHO Resolution, the engagement with the other relevant UN Programmes and Agencies, as well as the development of toolbox and capacity building activities enabling their appropriation to take actions locally.

  • Why is international collaboration and advocacy important?

Some of the challenges which are common to the 300 million persons living with a rare disease, or large numbers of them, can be addressed through international and regional actions, so to help change situations at national and local levels: awareness (policymakers, public, competent authorities, professionals), discrimination, access to diagnostic, information, access to the best practice of care, research advances and therapeutic development.

Working collaboratively across rare diseases and across countries enables the RDI membership to represent with legitimacy the interests of these 300 million persons and their families as much as to speak with one common voice.

The RDI patient movement can catalyse an eco-system of international collaborations with the different stakeholders – researchers (ex: IRDiRC), clinical leads (ex: Collaborative Global Network), industry (ex: IFPMA, Companies), UN System in New York or Geneva, Global Commission.

Collaboration across RDI members increasingly enables us to aggregate our patients’ experiences and perspectives, share existing knowledge and generate new knowledge to empower our respective organisations and advocates. We cannot be ignored anymore. We can have an impact. A common advocacy agenda and a mutual reinforcement of our advocacy capacities, increase our chances to create the change we want to see, over time and territories.

Jan Mumford

Organisation: Genetic Alliance Australia

Website: www.geneticalliance.org.au

  • Tell us a little about yourself and your experiences advocating for rare diseases.

I have been involved with the Australasian Gastro-Intestinal Trials Group (AGITG) Consumer Advisory Panel for thirteen years. AGITG conducts investigator lead clinical trials and I have seen how the landscape has changed with genetic technology, I have noted the rarer genetic profiles and the challenges of treatments. This background provided the knowledge for my role as Executive Director for Genetic Alliance Australia. GAA provides support and information for people with rare genetic conditions, education, and networking for support groups. GAA provides a voice for the rare disease community at state and federal levels through committee involvement and community submissions.

  • How would you like to contribute to RDI?

Rare conditions now, through genetic technology, can investigate causes and discover treatments. This needs to be done alongside the community to ensure social needs are part of this development for the whole community.

  • Why is international collaboration and advocacy important?

For rare conditions, there is power in numbers, not only in clinical robustness of investigation and effective treatment but in having a more powerful voice. We have at our hands not only genomic technology but also powerful communication tools to assist the clinical investigation, to assist in advocacy. Most importantly communication to connect with others with the same condition, create communities and reduce the feeling of being alone. Combined, rare is powerful in many ways.

Cassia Schiffer Rogero

Organisation: Associação Brasileira de Enfermidades Raras

Website: feberraras.wixsite.com

  • Tell us a little about yourself and your experiences advocating for rare diseases.

Sou Psicologa Clinica, estou no cargo de pesidencia da FEBER desde 2011; um de nossos projetos é um atendimento as pessoas vivendo com Doenças Raras composto por profissionais da área da saúde. Represento a FEBER no FOPPESP – Fórum dos Portadores de Patologias do Estado de São Paulo, sou representante de participante de pesquisa. Pela FEBER, organizo os atendimentos, palestras, videos e lives.

I am a Clinical Psychologist. I am the president of FEBER since 2011. One of our projects is a service for people living with Rare Diseases composed of health professionals. I represent FEBER in FOPPESP – Forum of Pathology Patients of the State of São Paulo. I am a representative of a research participant. On behalf of FEBER, I organise consultations, lectures, videos and lives.

  • How would you like to contribute to RDI?

Com o pouco de conhecimento e atuação que possuo. Acredito que aprederei bastante.

With the little knowledge and experience I have. I believe I will learn a lot.

  • Why is international collaboration and advocacy important?

Para um conhecimento maior das patologias, das Associações, das pesquisas e estudos das Doenças Raras.  Desculpem, mas não consegui encaminhar a minha imagem.

For a greater knowledge of pathologies, associations, research, and studies of Rare Diseases.

Durhane Wong-Rieger

Organisation: Canadian Organization for Rare Disorders (CORD)

Website: www.raredisorders.ca

  • Tell us a little about yourself and your experiences advocating for rare diseases.

My husband and I have been advocates for our two children born with rare disorders. But my rare disease advocacy began in 1990 as a volunteer and then president of the Canadian Hemophilia Society, advocating to redress the harms of the “tainted blood scandal”. After experiencing first-hand the power of unrelenting coordinated patient voices, I transitioned from psychology professor to patient advocate. When I realised that Canada had no orphan drug policy, I volunteered to write one. In 2006, I volunteered to lead the Canadian Organization for Rare Disorders, becoming president in 2012. Fast forward to 2019, the Canadian government committed $1 billion to set up Canada’s Rare Disease Drug Strategy and CORD has led the consultations for the past two years driving toward launch in 2022.

CORD is a founding member of Rare Diseases International and I have served on the Council as Chair since 2011. I am president of the Asia Pacific Alliance of Rare Disease Organizations. Other international roles are as follows: Chair of the Patient Advocates Constituency Committee for the International Rare Disease Research Consortium; Patient Advisor for APEC Rare Disease Network, and treasurer for the UN NGO Committee for Rare Diseases. These are not honorifics but volunteer roles that I commit to fulfilling to the best of my ability.

  • How would you like to contribute to RDI?

I bring to RDI more than 30 years of experience as a patient advocate, at every level from helping individuals to advocate for access or redress to engaging in global policy. I believe one of my strengths is forging connections, with individuals and organizations to collaborate and coordinate and also to exchange support and contributions.

I believe strongly in partnership, collaborating with those with similar interests for synergy and greater impact but also with those with presumably competing interests or incompatible positions. It is not just a matter of “keeping your enemies closer” but looking for points of agreement or convergence or, even better, superordinate goals. What are “win-win” solutions and outcomes of mutual benefit? Not a philosophy or strategy that works all the time … but does work more often and in more circumstances than we might believe at first glance. I also believe strongly in the art of negotiation but not compromise or entrenchment.

I am also willing to work hard, especially toward goals that I feel we have a fair chance of achieving.

I am also trying to do better at asking for help and sharing workload … as well as giving credit. I realize I have spent most of this space describing my self-perceived personal qualities and not so much knowledge or skills. I have reasonable research capacity, scientific understanding, and analytical skills.

  • Why is international collaboration and advocacy important?

Because rare diseases are all one community, regardless of the disease or the locale. Because what affects one person with a rare disease can and does have an impact on others … and more others … and finally all of us. In no other community, excepting perhaps a religious order, are there so many connections. We are the epitome of the “butterfly effect” whereby every small act can have tremendous consequences. But also, international collaboration because we need to engage others with power and influence; together we can, or something like that.