Creating a community is key to helping people living with rare life limiting diseases to live their lives to the full. We want provide a series of events where families living with a child that has a rare disease can meet others in the same position and gain support from each other.
The impact of receiving a diagnosis for your child of a life-limiting disease that you’ve never heard of is difficult to communicate to others and has been compared to living in the dark. The feeling of isolation and constant confusion becomes too much to deal with and navigating new jargon, hospital appointments, education plans, and more can be unbearable. The rarity of the diseases we support means that it is unlikely that anyone in their local community has experienced the condition.
We provide specialist practical & emotional support for the whole family from diagnosis, through living with the condition and dealing with key life transitions, to bereavement and beyond. We now want to organise a series of face-to-face events where families can meet up with others living with the same challenges. We will include counselling, wellness sessions and peer support groups, as well as fun social events for children and young people living with a rare genetic disease.