RDI COUNCIL of DIRECTORS

The RDI Council is Rare Diseases International’s board of directors.

Kirsten Johnson
Chair

Dr Kirsten Johnson is the President and one of the founders of Fragile X International. She also sits on the boards of EURORDIS - Rare Diseases Europe.

Kirsten is a FMR1 premutation carrier and has two adult daughters who live with Fragile X Syndrome. Her husband lives with a rare cancer, hairy cell leukemia. Kirsten works as a professional musician.

Kirsten was one of the co-authors of the 2022 Cells article which led to the renaming of the FMR1 gene and protein, removing offensive and outdated terminology. She has also co-authored a 2020 article in Frontiers, on Fragile X Premutation Associated Conditions 'and was lead author on a 2024 article in JARID on a holistic approach to Fragile X Syndrome.

Kirsten says, “Like many people globally, I had not heard of our rare conditions until my daughters and husband were diagnosed. As a member of RDI’s Council, I will work for global policies on diagnosis, treatment and support, so that no-one is discriminated against or left behind.”

“I am keen to support RDI’s development of a Global Network for Rare Disease, believing that a person-centred global network of care and expertise will benefit all PLWRD worldwide."

“My vision is to have an inclusive world where everyone living with a rare condition, whether it is physical, mental, intellectual or a combination thereof, is valued and included as an equal member of society. As an RDI Council member I will be a strong voice for people living with rare conditions around the world, advocating that rare diseases are an international policy priority and supporting the empowerment of RDI members through knowledge exchange, networking, mutual support and joint actions. Alone we can make a difference, but together we can change the world.”

Ritu Jain
Secretary
Ritu is president of DEBRA International (and co-founder and head of the global organisation’s Singapore chapter), supporting people living with the rare genetic disorder, Epidermolysis Bullosa (EB). She is co-chair of Singapore’s HTA consumer panel (ACE), serves as Vice-President of Globalskin, and as board member on Rare Diseases International as well as the International Rare Diseases Research Consortium. Her primary patient facing work is advocacy and capacity building for health equity and care access for patients and caregivers living with rare diseases, particularly in the Global South. In her day job, she holds concurrent appointments at the School of Humanities and the Lee Kong Chian School of Medicine at the Nanyang Technological University. A sociolinguist by doctoral training she remains research active in her dual interests: Language Policy & Intergenerational Language Transmission as well as Health Equity and barriers to access such as that impeding populations living with HIV and other stigmatized conditions.
Antoine Daher
Treasurer
Born in Lebanon, Toni, as he is more commonly known, is a Brazilian businessman who has dedicated his life to helping people living with rare diseases in Brazil. He speaks Arabic, French, English and Portuguese and has a Master in Political and Administrative Science. He became a rare disease advocate after his son was diagnosed with Hunter Syndrome (MPS II), an inborn error of metabolism. Toni is founder and president of Casa Hunter, president of Febrararas, the Brazilian Federation of Rare Disease Associations, and co-founder and president of Casa dos Raros. He works closely with the Brazilian Parliament to fight for public health policies and laws that grant a better life for people with rare diseases.
Durhane Wong-Rieger

Durhane is the President and Chief Executive Officer of the Canadian Organization for Rare Disorder (CORD). As an outspoken patient advocate, Durhane made a significant contribution to the haemophilia community following the contaminated blood scandal exposed in the early 90’s.

She began working with CORD as a volunteer in 2006 when she developed an Orphan Drug Policy and headed the advocacy campaign to improve access to new therapies for rare diseases. In 2012, Durhane became president of the Canadian organisation.

Durhane believes strongly in the value of international collaboration, serving on the Board of the International Alliance of Patients’ Organizations and as Chair from 2011-2013.

Through CORD, Canada was the first non-EU country to adopt Rare Disease Day in 2008. Durhane also took an active role in helping to set up the Asia-Pacific Alliance of Rare Disease Organisations (APARDO), serving as Secretary of the alliance. More recently, she was appointed as the President of APARDO.

Durhane has a PhD in psychology and, alongside her husband, has adopted two children, each born with different rare conditions.

Kelly Du Plessis

Kelly is the Founder and Chief Executive Officer of Rare Diseases South Africa, an organisation that was born out of necessity when her oldest child was diagnosed with Pompe disease at 11 months old. 

Since starting Rare Diseases South Africa, Kelly has taken Rare Disease policy and patient advocacy to new heights in South Africa to raise awareness and create a new narrative in terms of treatment and access for rare disease patients. Understanding the isolation and lack of support surrounding a rare disease diagnosis, providing a safe place for patients as well as families, and improving access to patient-centred care, with a specific focus on Low-Middle Income Countries, has become her passion.

Kelly is a member of IRDiRC’s Patient Advocates Constituent Committee, and is currently involved in the development of Africa Alliance for Rare Diseases. Kelly lives in South Africa with her husband and two daughters.

Monica Ferrie

Possibilities and potential bring together the threads of Monica’s career. Working with and for individuals, families, communities, organisations and sectors, committed to equity and fairness, for many years.

Monica has worked across the community, health, education, business and government sectors. Monica joins the Rare Disease International Council, currently serving the genetic, undiagnosed and rare disease communities as the Chief Executive, Genetic Support Network of Victoria (GSNV), and founding member of GUARD Collaborative Australia, and Treasurer of the Asia Pacific Alliance of Rare Disease Organisations (APARDO). Leading in patient advocacy, presenting nationally and internationally and bringing experience of a range of senior leadership and strategic roles in Government, education, the private sector and international projects.

Monica is an Honorary Fellow of University of Melbourne and actively represents the community on many local, national and international committees, industry and advisory groups, research projects, advocacy and policy efforts and Boards .

Nadiah Hanim Abdul Latif
Nadiah is the President of the Malaysian Rare Disease Society & the Regional Representative for Southeast Asia, Qatar, Oman, UAE, Jordan, Algeria, Iraq & South Korea of the Phelan McDermid Syndrome Foundation. She has over 2 decades of experience in the field of social impact, disability advocacy & inclusion, with over 15 years focusing on rare disease advocacy. Through the Malaysian Rare Disease Society and her other roles both in corporate & non-profit, she has been involved in multi-stakeholder collaborations & negotiations, from engagements with policymakers to body corporates, media, IOs, patient groups and civil society at local, regional & international level pushing for equity and rights for persons living with RD & their families.

governance documents