In collaboration with the Tuberous Sclerosis Association (TSA), Genetic Alliance UK organised to bring together local families to hear about support, information and research opportunities available to them in Wales.
On Saturday 26 September 2015, patients, carers and families heard from expert clinicians and researchers within the field of tuberous sclerosis at the University Hospital of Wales, Cardiff.
We heard from Jenny Jones, the newly appointed Advisor for the Tuberous Sclerosis Association in Wales. Professor Julian Sampson spoke about the TSC clinic that was launched in May and access to this specialist service for patients and families. Professor Sampson informed families about a drug, everolimus, for the treatment of tumours in some patients with Tuberous Sclerosis which is now available to patients in Wales that was not previously approved for use.
Genetic Alliance UK will continue to work closely with the TSA to ensure that the network of families and carers supported by the Helping Patients project* continues to grow. Feedback from the event has been extremely positive. One parent commented:
“Thank you to everyone involved in a brilliantly informative day”.
If you have questions or comments about Genetic Alliance UK’s work in Wales, please contact our Development Officer for Wales, Emma.
*The Helping Patients Project is run by Genetic Alliance UK in Wales to establish and develop responsive and dynamic, condition-specific, peer support networks or patient groups where none previously existed.