Personal recordings for Rare Disease Day

To celebrate Rare Disease Day we encouraged people to each answer 5 questions about their rare condition and how they feel about it:

  1. Which rare disease do you/your family member/friend have?
  2. How does it affect you and/or them?
  3. Have you met other people affected by the same rare disease?
  4. Have you had a positive experience with the medical profession regarding your rare disease?
  5. How do you think the lives of people with rare diseases could be improved?

Listen to the answers of those affected by aniridia

You can add your thoughts to these in text in the comments below or by recording your own on Audioboo.

Rare Disease Day

Rare Disease Day. It’s an annual international initiative to raise awareness amongst the general public and decision-makers about conditions like aniridia and their impact on people’s lives. By going along people not only enjoyed themselves but also help generate publicity for the day. Find out more at the Rare Disease Day website and follow it on Facebook.

About Aniridia Network

A charity support group for people with the genetic visual impairment aniridia and their families in the UK and Ireland. Our vision is that people with/associated with aniridia are hopeful, confident, supported and well informed regarding aniridia. Founded in 2000. First registered as a charity in 2011 and fully in 2018.
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