Helping patients find information when they are discovering their disease
Join our members in finding the resources and support you need to navigate your health journey.
Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
Sturge Weber UK
Sturge Weber UK is a voluntary support group for families and adults affected by Sturge Weber syndrome, a rare neurological disorder. A registered charity, it was launched in 1990 as a independent group by the disability support organisation Contact a Family.
Ataxia and Me
A non-profit organisation founded by a patient, and run by patients, helping to maximise the patient voice within the medical, health and pharma community
World Pancreatic Cancer Coalition
Smile with Shiv
Raise awareness of Duchenne Muscular Dystrophy Raise as much money as possible so it can be given to those working to save Shiv’s life and thousands of other children with this horrific condition Work with the Duchenne community to ensure we have access to potential treatments as early as possible
European Tuberous Sclerosis Complex Association
Established in 2012, ETSC is a federation of Tuberous Sclerosis Associations. ETSC believes in total “patient experience” and that interaction with all healthcare providers and relative agencies is paramount. Objectives • Increase knowledge and awareness on TSC • Promote implementation of European and International diagnostic criteria, surveillance and treatment guidelines • Stimulate research on TSC • Interest European and International organisations in the welfare of those with TSC and their families • Exchange information of mutual interest between associations. Aims • Total patient experience and interaction in each individual country with all healthcare providers and agencies • Uniting TSC Associations to ensure knowledge and surveillance on our rare disorder and orphan drugs are increased • Good working relationships with Pharma and the inclusion of representatives from National Organisations in information and education on Clinical trials and any new drugs being developed for use with our rare disease • Vigilance on protocols and new drugs
UK Masto
We are a registered charity supporting people with mast cell diseases and their families. The group was founded in 2004 by Irene Wilson and became a registered charity in 2013. Support We support patients and parents of patients through our private web forums, by holding patient conferences and occasional regional meet-ups, and by providing one-on-one support when needed. Over the past fifteen years, hundreds of patients have supported each other and shared their experiences through our email group (soon to be superseded by our GDPR-compliant web forum). We help patients (and parents) learn to understand the conditions and help them to advocate for their needs in healthcare, in employment and in school. We provide educational materials for patients, families and their communities.