RDI Council Election 2021

RDI Council Election 2021

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The RDI Council election is now open. All RDI Full Members may vote.

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

Three seats on the RDI Council are open for election. Please vote for THREE (3) candidates

Each RDI Full Member organisation may vote once.

Voting closes on Thursday, 29 April 2021, midnight CET (Paris Time).

Meet the Candidates running in the RDI Council election

RDI Council Nominees 2021

Roberta Anido

Organisation: Federación Argentina de Enfermedades Poco Frecuente (Argentine Federation of Rare Diseases -FADEPOF)

Website: www.fadepof.org.ar

Roberta established the Association for Patients with Primary Immunodeficiencies (AAPIDP) in 2005. She is also the Chair of the Argentine Federation of Rare Diseases (FADEPOF), where she also served as Vice-Chair for four years till 2020. Since 2007, Roberta has served on the board of directors of the International Patient Organisation for Primary Immunodeficiencies (IPOPI) where she works with organisations and patients in the Latin American region (LATAM).

Roberta lives in Buenos Aires, Argentina, with her husband and two daughters. One of her daughters lives with CVID, an immunodeficiency. Her family’s experience motivated her to established AAPIDP. She is very active and passionate about raising awareness of rare diseases in Argentina and LATAM. Roberta strongly believes in the voice of the patient and, together with the rare disease community, she hopes to advocate more and strengthen patient organisations around the world.

Roberta hopes to contribute to the RDI Council by being the spokesperson and the voice of the LATAM region. She would like to change the situation faced by patients and their families in the Latin American region with focus on consolidating robust public policies that promote the equality and equity of the rare disease community in the region and around the world.

Lara Bloom

Organisation: The Ehlers-Danlos Society

Website: www.ehlers-danlos.com

Lara Bloom has been globally raising awareness of rare, chronic and invisible diseases, specializing in the Ehlers-Danlos syndromes, hyper-mobility spectrum disorders (HSD) and related disorders for over a decade. Lara is active in the rare disease community in many ways, including being the President and CEO of The Ehlers-Danlos Society (EDS), a Global Strategic Advisor for Global Genes, a member of the RDI Advocacy Committee, and an Expert Advisor in the European Reference Networks ReCONNECT & VASCERN groups.

In 2016, Lara completed expert-level training in medicines research and development and became a fellow of the European Patients Academy EUPATI.  In March 2020, Lara was appointed a Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, commemorating ten years in the field of patient advocacy.

Lara lives with Ehlers-Danlos syndrome and was diagnosed in 2004 after the common long diagnostic odyssey. Lara would like to bring the knowledge and experience she has gained over the past decade in patient engagement and global collaboration to the RDI Council.

Kelly Du Plessis

Organisation: Rare Diseases South Africa

Website: www.rarediseases.co.za

Kelly is the CEO and founder of Rare Diseases South Africa. She has dedicated her career to furthering the plight of those impacted by rare diseases in developing countries. She also serves on various boards and committees which focus on achieving equitable healthcare for all.

Patient advocacy has become ingrained in Kelly’s soul after having to walk the difficult road of self-advocacy for her son after he was diagnosed with Pompe disease. At the time, treatment for his condition was not available in South Africa, and Kelly’s journey as a patient advocate began.

Kelly hopes to add value to the RDI Council by bringing the perspective of developing countries and emerging markets. She has a good understanding of the aims and intentions of RDI, as Rare Diseases South Africa has been a member since its inception, and her hope is to bring in the African voice.

Monica Ferrie

Organisation: Asia Pacific Alliance of Rare Disease Organisations (APARDO)

Website: www.apardo.org

Monica is a Board Member of the Asia Pacific Alliance of Rare Disease Organisations (APARDO) and CEO of the Genetic Support Network of Victoria – an organisation mandated to support people with genetic, undiagnosed and rare conditions and those who support them. Additionally, she is a member of the Panel of Experts for the WHO Collaborative Global Network for Rare Diseases.

Monica’s experience includes working with and for private sector organisations, not-for-profits and institutions. Through these roles, Monica has sought to make a positive difference and advocate for real change, including increased and equitable access to testing, treatment, research, clinical trials and services.

Fairness, equity and gratitude are values that she was raised on, and these values have informed her work and life. Monica is an optimist and never loses hope that we can and will be better as individuals and nations. She is also a realist and believes that none of us can do it alone.

Monica’s values drive her commitment to the rare disease community. Monica would like to bring her skills and experience to the RDI Council and work in collaboration to deliver on agreed objectives of RDI. She also brings a significant network across the Asia Pacific, through APARDO.

Ritu Jain

Organisation: DEBRA International

Website: www.debra-international.org

Ritu has represented the voices of rare disease patients and organisations in the Asia Pacific region through her work as President of DEBRA Singapore and for the Asia Pacific Alliance of Rare Disease Organisations. Ritu has also contributed to the rare disease community as a board member of Debra International, IRDiRC, and RDI since 2015.

Ritu would like to support RDI by continuing to serve as a coordinator of the WHO Collaborative Global Network for Rare Diseases (CGN4RD) project for the Southeast Asia and Western Pacific region as well as continuing work on various other ongoing projects. She also hopes to continue to bring rare disease concerns and/or priorities from the Asia Pacific region to the organisation.

She is committed to speaking for minority and unheard communities in the global South in her advocacy roles and to fostering inclusivity and capacity building for nascent and emerging patient groups internationally.

Sheila Khawaja

Organisation: World Alliance of Pituitary Organizations (WAPO)

Website: www.wapo.org

Sheila is the Vice-Chair of the World Alliance of Pituitary Organizations (WAPO) and an acromegaly patient since 2003. Medical treatments and surgery eventually enabled Sheila to regain control of her life by 2012.

Sheila’s advocacy engagement began in 2013, at grassroots level, as president of a local pituitary patient organisation in Trieste, Italy. In 2014, she joined the Board of the national Italian pituitary organisation as an international liaison. A few years later, she joined the Board the WAPO, based in the Netherlands, and as of 2017, was elected as Vice-Chair.

Sheila worked at a UNESCO-administered international organisation, a key experience in helping her understand the importance and value of global umbrella organisations.

Sheila’s engagements include, but are not limited to: lay summary advisory panels (SAGE publishing), PFMD Strategic advisory board, and the DIA global Patient Engagement Core committee.

As a Board member of a global umbrella organisation and as a rare disease patient, Sheila have become acutely aware of the vast health inequalities around the world. She has also seen how united voices can bring change to inequalities. She profoundly believes that together we will eventually reach global health coverage, but this will happen only if we are all active and committed. For this reason, Sheila would like to join the RDI Council to bring the strong voice of the global rare disease community to ensure that all stakeholders understand that rare diseases are not unique to the few, but could also involve them too, one day.

Jesús Navarro

Organisation: Alianza Iberoamericana de Enfermedades Raras, Huérfanas o Poco Frecuentes (Iberoamerican Alliance for Rare Diseases – ALIBER)

Website: www.aliber.org

Jesús is the founding member and Vice-President of the Ibero-American Alliance for Rare Diseases (ALIBER). He is also the president and founder of the Mexican Organization for Rare Disorders (OMER).

Jesús works to develop public polices and a National Registry of Rare Diseases and is also part of the committee of experts for Mexico’s General Health Council.  He is the founding member of the inter-institutional table of rare diseases for the state of Jalisco, Mexico.

Jesús, a doctor and surgeon by training, has been active in the rare disease community since 2004, defending the rights of persons living with a rare disease in Latin America. He has participated in international forums for rare diseases, uniting the rare disease community in Mexico and Latin America with its members in the rest of the world.

Jesús was a member of the RDI Council for a period of two years, from 2019 to 2020. On the Council, he would like to represent the Latin American rare disease community, and hopes to share and integrate Latin American perspectives in order to achieve equity with the rest of the world and help ensure no-one is left behind.

Nuala Ryan

Organisation: NCBRS Worldwide Foundation

Website: www.ncbrs.com

Nuala is on the board of the NCBRS Worldwide Foundation and was previously on the board of IPPOSI, the Irish Platform for Patient Organisations. She is a member of the EUPATI National platform in Ireland and she serves as a patient advocate on two steering committees in Ireland, namely, Health Service Executive and Health Information Quality Authority. Nuala is part of multiple IMI funded public-private partnerships, including working with Health Research Charities Ireland to promote genetic research and policy for better diagnosis and management of rare diseases.

Her professional experience, includes 27 years working in research at an international Contract Research Organisation, with activities in the field of rare diseases.

Nuala has personal experience with rare diseases. Her son lives with NCBRS. She hopes to bring her personal, professional and advocacy experiences and abilities to the RDI Council.

Lisa Sarfaty

Organisation: National Organization for Rare Disorders (NORD)

Website: www.rarediseases.org

Lisa has spent the last decade of her career at the National Organization for Rare Disorders (NORD); advocating for the rare disease community in the USA, and for the last five years with RDI at the global level. Throughout her career at NORD, Lisa has held various positions including overseeing the strategy and operations for NORD’s patient advocacy, organization capacity building, and membership programs. Lisa currently leads all strategic planning and new program development for NORD.

In 2014, Lisa launched a grassroots network of advocates to support local and state advocacy for rare diseases, called the Rare Action Network. This program now works with over 15 000 members (patients, caregivers, supporters) on issues that affect patient access to quality diagnostics, clinical care, support services, research and treatments. 

Lisa’s goal and hope is to support the RDI Secretariat and RDI Council to develop a strategic multi-year capacity building plan that enables RDI to better support the growth and development of its members at the national and international level.

Prasanna Shirol

Organisation: Organization for Rare Diseases India (ORDI)

Website: https://ordindia.in/

Prasanna is the co-founder and Executive Director of the Organization for Rare Diseases India (ORDI). Moreover, he started the Pompe Foundation in India and co-founded Lysosomal Storage Disorder Support Society India.

Prasanna’s daughter, Nidhi, was the first person diagnosed with Pompe in India. Prasanna and his family endured unimaginable challenges due to lack of diagnosis and treatment in the public health care system in India. Due to the lack of support, Prasanna had to sell his properties to pay for the exorbitant treatment costs and quit his job to support his daughter full-time.

He started the Pompe Foundation because he realised that there are many other families in India fighting the same silent battle as his family. Later, along with other parents and patient advocates, he co-founded the Lysosomal Storage Disorder Support Society India, which was India’s first national-level support group for parents. Having built a global network of Rare Disease Advocates, and upon realising that India does not have a national umbrella organisation, Prasanna co-founded ORDI in 2013. Today, ORDI serves as a collective voice for the Rare Disease Patients across India.

Prasanna hopes to bring the diverse Indian rare disease perspective to the RDI Council and the global rare disease community.  Prasanna believes that the participation of India in RDI Council would be critical as an estimated 70 million persons in India live with a rare disease and it will help in understanding the experience of low and middle income countries. 

Rachel Yang

Organisation: China Alliance for Rare Diseases (CHARD)

Website: www.chard.org.cn

Rachel started volunteering at the Chinese Organization for Rare Disorders (CORD) six years ago. Deeply touched by patients and families, and inspired by their courage, tenacity, and optimism in the face of major obstacles, she continued to volunteer. Since 2015, Rachel has been working to bridge the Chinese and the international rare disease community. She has also been active in the international rare disease communities through RDI (as a Council member from 2018 to 2020) and IRDiC (representing China’s National Rare Disease Registry). For Rachel, working with the rare disease community is a privilege and she is grateful for the opportunity.

Rachel is a trained physician scientist and worked in the IT industry leveraging information technology to address health care issues. She was born in China, studied in the USA, and worked in three continents (USA, Europe and Asia).

Rachel hopes to bring her broad range of professional experiences to the RDI Council to contribute to the international rare disease community. She also hopes to be a bridge for the Chinese/Asian rare disease community by bringing Chinese/Asian perspectives to RDI and the international rare disease community.

Rachel has been nominated by the China Alliance for Rare Diseases and the Illness Challenge Foundation China.