Our aims: –
– To provide strength and support for individuals diagnosed with Sturge Weber Syndrome and their families and carers.
– To promote awareness of the syndrome and to raise both public and professional awareness of the condition.
– To promote medical research into the causes and treatment of this syndrome.
– To offer to connect individuals diagnosed with Sturge Weber Syndrome and their families to create a supportive community via social media and face to face events and offer a Family Weekend annually for families across the UK and Ireland.
– To provide a quarterly newsletter for members
– To work with health professionals to have a greater understanding and create a collaborative approach in the level of care from providing a diagnosis to treatment plan and wellbeing for a person with Sturge Weber Syndrome throughout their life.
– To empower our families by keeping up to date with changes in legislation, services and signposting to relevant external agencies for a co-productive approach to supporting them in meeting their best outcomes
Overall, Sturge Weber UK plays a crucial role in supporting individuals and families affected by Sturge Weber syndrome in the UK, as well as raising awareness and promoting research to improve the quality of life for those living with this rare condition.
