Improving lives for those with SCN8A and their families
SCN8A UK & Ireland was set up by a group of parents affected by SCN8A with the aims of promoting research, fund raising and providing help and support for families with children and adults who have SCN8A.
Living with someone with SCN8A can be a very difficult and potentially isolating experience for families. For most people, when they receive a SCN8A diagnosis, they will not know of anyone else with SCN8A.
We want to connect families who live in the UK and Ireland with each other for mutual support and information sharing. We also work collaboratively with groups from across Europe, America and beyond. With fewer than 500 cases known worldwide, international co-operation is vital and we are very much part of a global family and we will also link UK and Irish families to these international forums and support groups.
From a medical perspective there is an urgent need for faster diagnosis and more effective treatments to SCN8A. The charity is committed to working with researchers to help find treatments and understand more about the disorder.
We are a small charity registered with HMRC for Gift Aid. Any donations are hugely appreciated and valuable.
If you are a family already dealing with SCN8A or have a recent diagnosis, please know you are not alone and please contact us to join the community.
To support and drive research to produce effective treatments for SCN8A.
To do this we will work collaboratively with groups across Europe and the world to advance research, understanding and the quest for better treatment.
Connect and support families in the UK and Ireland to offer mutual support and information, while linking to the wider global SCN8A community.
To do this we will arrange family gatherings, support conferences, and share our experiences. We will also seek to help families who need mobility, educational and sensory equipment, along with emotional support.
Fundamentally we want any family affected by SCN8A to know they are not alone.
To provide information, resources and signposting to families and clinicians.
We also seek to support newly diagnosed families and their clinicians by linking to research and local and international expertise.
Our aim is also to raise as much awareness of this syndrome as we can to ensure early diagnosis and treatments. We will be evolving the information provided on this site for families.