Conference offers insights into development of new national rare disease plan

A major conference has highlighted the importance of joined-up hospital, primary care and community services for people with rare diseases.

To mark the 12^th annual World Rare Disease Day, Rare Diseases Ireland held the conference Bridging Health & Social Care.

This conference came against a backdrop of a number of issues of concern to the rare disease community in Ireland, among them:

• the impact of Brexit for patients with rare diseases north and south
• gaps between our health and social care services for people with rare diseases and their families
• the lack of a new National Rare Disease Plan to replace the previous one which expired last December, with many of its recommendations unimplemented
• current clinical genetics staffing levels in Ireland being amongst the worst in Europe, with Northern Ireland having four times the number of Genetic Consultants than the Republic per head of population
• waiting lists for genetic consultations growing year-on-year, with the latest figures indicating a 20 per cent increase in the numbers on the waiting list between December 2017 and December 2018
• the challenge of accessing new and innovative orphan drug therapies, in a landscape where there are drugs approved for only approximately 5 per cent of the 6,000-plus rare diseases

The conference heard directly from patients and patient organisations facing the challenges of living with, and caring for, people with rare diseases on a daily basis. There were also contributions from speakers responsible for public policy and integrated care in the area.

Rare diseases can be chronically-debilitating, progressive and life-threatening, and so the conference heard directly from patients and patient organisations facing the challenges of living with, and caring for, people with rare diseases on a daily basis. There were also contributions from speakers responsible for public policy and integrated care in the area.

Vicky McGrath, CEO of Rare Diseases Ireland, said: “This conference offered a unique opportunity to inform Government and policy-makers of the importance of better connecting and co-ordinating our health and social care services for people with rare diseases and their families. The burden of rare diseases is enormous, and relatively simple steps like co-ordinating care and social services will go some way to help lighten this load.”