Caring for Special Babies & Children/Adults
Support Organisation for Trisomy 13/18 - (Patau's/Edward's Syndrome)



Rare Diseases Ireland

Rare Disease

Patient Forum


Expression of Interest

Rare Disease Patient Forum to assist in the development of new National Rare Disease Strategy for Ireland

Expressions of interest (EOI) are being sought from people living with rare diseases, their family members and the wider rare disease community to contribute to and support development of the new National Rare Disease Strategy for Ireland. 

You may complete the EOI online  or download the form to complete off-line and email to or submit by post to: Rare Diseases and Long COVID Policy Unit, Department of Health, 50-58 Lower Baggot Steet , Dublin 2. , D02 XW14

Expressions of interest will be accepted until 5pm on Monday, 8 January 2024. There will also be further opportunities to contribute and get involved subsequent to this date however we expect to populate the Steering Group and RD Patient Forum from submissions received by this date.

If you require assistance to complete the Expression of Interest please contact please contact by 3 January 2024 to ask for assistance.

The Expression of Interest application form is supported by the Department of Health. The Minister and the Chief Medical Officer have issued a statement supporting this initiative.  

Rare Diseases Ireland Website