Many of the conditions we work with are classified as a rare disease, meaning that they affect fewer than one in 2.000 people. Fighting Blindness works with many rare disease groups nationally and internationally to raise awareness about rare diseases and to advocate for improved services for people affected. On the last day of February every year we join with these groups to celebrate International Rare Disease Day.
This year we marked the day with a Rare Disease Conference in Dublin Castle. The conference was organised by the Genetic and Rare Disorders Organisation (GRDO), the Medical Research Charities Group (MRCG) and the Irish Platform for Patient Organisations, Science and Industry (IPPOSI). Fighting Blindness currently holds a position on the board of each of these groups.
The conference heard calls for the incoming Government to radically overhaul genetic services in Ireland and to ramp up implementation of the National Rare Disease Plan. The plan, launched in July 2014, has seen little progress in the development of genetic services in the almost two years since, with several hundred patients continuing to remain in limbo in accessing genetic services for periods of in excess of 15 months. The ongoing development of clinical trials and emerging gene therapies brings so much hope to people and families living with rare diseases, however the rare disease community in Ireland is concerned about the prioritisation of genetic services that are vital to facilitate the delivery of these therapies.
Fighting Blindness continues to work as part of the Rare Disease Taskforce, advocating for full implementation of the National Rare Disease Plan to address these issues.