Sunday 29th October saw the 3rd Norrie family meet in the city of Birmingham. Families travelled from Bristol, Essex, Kent, London, York and Leicester to meet each other. We had intended to go to the park but once we all got talking there was no stopping and the time flew by as we shared a huge table in the corner of a coffee shop.
Seven Norrie families made it to the gathering. It was a wonderful opportunity for the community which ranged in age from 19 months to 34 years to get to know each other and share their experiences of living with Norrie disease and what has and hasn’t worked for them. Ed who is new to the community gave an inspirational speech about his life and his approach to living with Norrie disease. We are happy to say that Ed is also going to join our team of mentors and you can read more about him on our upcoming peer mentoring page.