We are active members of DEBRA International, Rare Diseases Ireland, EURORDIS – Rare Diseases Europe, Disability Federation of Ireland, Care Alliance Ireland and IPPOSI. We also take part in different policy forums, including the Rare Disease Forum, Social Policy Network and the Health Research Charities Ireland (HRCI) Advocacy and Communications Committee.
We are uniting for change for everyone with skin as fragile as a butterfly wing.
Rare Disease Day takes place on the last day of February each year. Epidermolysis bullosa (EB) is one of over 6000 rare diseases worldwide. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare disease and their impact on peoples' lives.
Every year, we prepare a pre-budget submission that recommends changes and improvements in the administration of public and social services and related policies to EB care.