Meet some of Ireland’s “rare community”…
A message from our Chair
Welcome to Rare Diseases Ireland. We are a patient advocacy national alliance for voluntary groups representing people affected by or at risk of developing a rare disease. RDI is committed to the identification, treatment, and cure of rare disease through programs of education, advocacy and patient engagement.
We welcome input from all stakeholders of the rare disease community in Ireland. We at Rare Diseases Ireland feel strongly that it will only be through the collaboration of all stakeholders that we will advance the cause of and improve the lives of those affected by rare diseases and their families.
We hope that you will find this site to be of some help and look forward to hearing from you.
About Rare Diseases Ireland
Rare Diseases Ireland (RDI) is the national alliance for rare disease patient organisations in Ireland, working across all rare diseases to improve the lives of the estimated 300,000 people living with rare diseases in Ireland.
We advocate for, empower and engage organisations and advocates, as well as people living with rare diseases, their carers and their families, to mobilise together with a strong voice to shape policies and solutions driven by the needs of all people living with rare diseases.
Our vision is a country where all people living with rare diseases live longer and better lives, reaching their full potential, and are included in a society that leaves no one behind.
We want equity for people living with rare diseases in Ireland – equitable access to diagnosis, treatment, health and social care and opportunity.
Our strategic priorities 2022-2025 have been agreed by our board and presented to our members at our 2022 AGM
History – RDI
Rare Diseases Ireland: Building on a 30 year past to create a better future
Rare Diseases Ireland (RDI) is the National Alliance for Rare Diseases in Ireland and its objective is to represent the voice of those who have or are at risk of developing a rare disease. The organisation was established by patients and volunteers in 1988 as the Inherited Disorders Organisation (IDO) in order to advocate in the first instance for the establishment of a national center for medical genetics, which opened at Our Lady’s Children’s Hospital Crumlin in 1994. The voluntary group also acted as a watchdog against the practice of genetic discrimination and was an active voice in the development of policy to meet the needs of the rare disease community on issues concerning, access to a diagnosis and the appropriate medical and social care.
Changing its name to GRDO – the Genetic & Rare Disorders Organisation it successfully advocated on issues affecting the rare disease patient community, providing advocacy for fair and enlightened public policies; education for patients, their families, medical professionals and the public; and leadership and representation for its member patient organizations.
We must remember that each individual rare disease patient community, widely dispersed and relatively small in number, had to strive to come together to advocate for their needs. This was facilitated primarily through European disease specific groups. In 1997 the individual European rare disease organisations came together with the national rare disease umbrella groups to establish EURORDIS – Rare Diseases Europe. RDI was one of the first members of EURORIDS.
Since joining EURORDIS in 1997, RDI has played an active role in advocating for key European policy achievements that have improved the lives of those affected by rare diseases in Ireland and across Europe. These have included:
- Adoption of the EU Regulation on Orphan Medicinal Products in 1999
- Adoption of the EU Commission Communication on Rare Diseases in 2008
- Adoption of the EU Council Recommendation on European Action for Rare Diseases in 2009
- Adoption of the EU Directive on Patients’ Right to Cross-Border Healthcare in 2011
- The promotion and maintenance of rare diseases as an EU Public Health Policy priority and an EU Research Framework Programme priority
- Promotion of National Plans and Strategies on Rare Diseases in EU Member States and beyond, resulting in the publication of Ireland’s National Plan for Rare Diseases: 2014-2018
- The development of the annual International Rare Disease Day
Change of name not purpose…
On February 28th 2018, Rare Disease Day, GRDO officially relaunched as Rare Disease Ireland – RDI. This name change was approved at an AGM on October 24th 2017 as a fitting name for the organisation representing the needs of patients living with rare diseases in Ireland.
Board of Directors
The Board of Directors provides strategic direction and governance to our organisation, helping to support and guide all aspects of our work. Our Board consists primarily of people living with rare diseases, family members of PLWRD and representatives of patient organisations. Board membership is supplemented by key skills, including industry, medical, research, etc. We aim to have a broad range of experiences on the Board, addressing all of the challenges encountered by the rare disease community – research and development of new devices & therapies, access to and reimbursement of new devices & therapies, development of diagnostic and therapeutic care pathways and associated services, etc.
- John McCormack, Interim Chair – Retired CEO
- Michael Blighe, Secretary – Legal & General
- Mairead Hennessy, Treasurer – Taxkey
- Anne Lawlor – 22q11 Ireland Support Group
- Paula Guerin – Biopharma Business Advisor
- Anne Micks – Irish EDS and HSD
- Laura Egan – Rare Ireland Family Support Network
- Avril Daly – Retina International & EURORDIS
- Susanne O’Reilly – Novartis
RDI Audited Accounts
Contact Rare Diseases Ireland
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