The Joe Finnegan Show

Podcast: Rare Disease Day

Feb 27, 2020 13:02 By Kevin McDermott
Podcast: Rare Disease Day Podcast: Rare Disease Day
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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

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Vicky McGrath, CEO Rare Diseases Ireland and Dara Woods, who was diagnosed with HHT spoke to the Joe Finnegan Show.

Take a listen here:

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