The Irish Platform for Patients' Organisations, Science and Industry (IPPOSI) have asked people to describe to the public what life is like living with a rare disease in Ireland.
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IPPOSI is a patient-led group and has been involved in Rare Disease policy development for many years and felt it important for the patient to tell and control their own story. All of these videos have been approved by the patient participants and they have consented to telling their story to the world online. It is hoped that the public will better understand the issues for people living with Rare Diseases after watching these videos. Also, there maybe other patients with similar conditions in the world who would just like to know someone else has the rare diseases they have.
Individual Rare Diseases are Rare but it is not Rare to have a Rare Disease. There are 6-7000 Rare Diseases, it is estimated that 6-8% of EU citizens have or have yet to be diagnosed with a Rare Disease. 157,000 people in Ireland have a Rare Disease.
Credits:
Produced and Directed: Eibhlin Mulroe, IPPOSI
Camera: Joe Hoey
Post Production: Cathy Grieve and Diarmaid Keane Red Diamond Media
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