In November 2018, the first official Family Day took place, enabling families to get to know each other and share their experiences of living with Norrie Disease, and what has and hasn’t worked for them. For many this was the first time they had met another family living with the same condition.
Unfortunately we have not been able to run any Family Days in 2020 due to Covid-19. We sincerely hope to be back soon.
The NDF is important to me because it means I can connect with other people like me. I am also worried that one day I might start to lose my hearing, the NDF gives me hope for the future.
We didn’t want families to feel as alone as we did after our son’s diagnosis. Sharing information and resources is vital for families who have a child with a rare disease and new research gives us hope for the future.