Monthly Archives: February 2013

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: Which rare disease do you/your family member/friend have? How does it affect you and/or them? Have you met other … Continue reading

Rate this:

Posted in Patients' tales | Tagged , | Leave a comment

A parent’s experience of our befriending scheme

To mark Rare Disease Day 2013 we have a story of just how incredibly helpful it is to bring people affected by a rare disease together. A parent contacted our befriending scheme last November. She has two children, the youngest being … Continue reading

Rate this:

Posted in Parents' accounts | Tagged , | 1 Comment

Meet-up in Newcastle 24 February 2013

People in North East England affected by aniridia came together in on Sunday 24 February for lunch and chat and fun. The lunchtime meet-up was in Zizzi in Metrocentre, Newcastle Partners, family and friends of people affected by aniridia were all … Continue reading

Rate this:

Posted in ANUK news, Parents' accounts, Patients' tales | Tagged , | Leave a comment

Protected: Going to a work place party 2

There is no excerpt because this is a protected post.

Rate this:

Posted in Patients' tales | Tagged , ,