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
Barth Syndrome Foundation
Working together we are making a difference in the lives of children and their families. One day there will be a cure; we hope you will help us make that day come sooner. Raising awareness among physicians, scientists, and the general public; Supporting relevant research through an international grant research program; Providing a caring and educational community for affected families; and Hosting a unique information resource.
Cavernoma Society
The Cavernoma Society was set up in late 2018 and officially achieved its charity registration in July 2019. It has been created to support cavernoma patients, their families, carers, and friends, through the cavernoma journey. We're working towards a cure and better management for cavernoma, but in the meantime we can support you by offering guidance, reassurance, medical information, and counselling. We're member led, so we're constantly evolving our services and making sure we're delivering the best for you.
Children's Cancer and Leukaemia Group
We are a leading children’s cancer charity and the UK and Ireland’s professional association for those involved in the treatment and care of children with cancer. CCLG is the only organisation which brings together all professionals working within childhood cancer to share expertise and knowledge to improve treatments and patient care. Our ultimate aim is to cure as many children as possible while reducing the side effects of treatment.
DKMS
DKMS is an international charity dedicated to the fight against blood cancer and blood disorders.
National Organization for Rare Disorders
Since 1983, NORD has been a national steward and a steadfast partner helping those who battle and care for rare disease feel seen, heard, supported and connected. We’re a full-service, mission-driven nonprofit reimagining a future where every person with a rare disease, and their families live their best lives.
Stiff Person Syndrome UK and Ireland Support Group and Charity
This group is solely for the support of those suffering from Stiff Person Syndrome (SPS). Family and friends of sufferers are also welcome to the same support. The site may also be of interest to caregivers, care professionals, researchers (together with advocates for the condition) and the general public.