Rare Disease Day is on Saturday, February 29 – a rare day for rare diseases. There are actually between 6,000 and 8,000 rare diseases. So, while a disease may be rare, rare diseases are definitely not.
Consequently, a number of patient organisations have come together under the umbrella of the Rare Disease Taskforce to produce a new booklet for people who want to find out more about rare diseases.
The publication – An Easyguide to Rare Diseases in Ireland – features information on rare diseases in general, provides signposts for support services and patient groups, and offers more detailed information on specific conditions
Vicky McGrath, CEO Rare Diseases Ireland and Dara Woods, who was diagnosed with HHT spoke to the Joe Finnegan Show.
Take a listen here:
