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
Timothy Syndrome
Our mission is to improve the diagnosis, treatment and care of individuals with CACNA1C-related disorders, including Timothy Syndrome and LongQT8, and to support the families and carers of those diagnosed. We support families and individuals by sharing our experiences through our online community, at our Family Day and our conferences.
Action Bladder Cancer UK
We want bladder cancer to be recognised as a common cancer and to receive the acknowledgement, level of public awareness, improvements in treatments and medical research investment which it merits and which those with bladder cancer deserve. We want bladder cancer patients to have a voice and the support they and their families require.
VHL UK Ireland
To relieve the charitable needs of persons who have von Hippel-Lindau Syndrome (VHL) and similar genetic conditions such as Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) and Birt-Hogg- Dubé Syndrome (BHD) and their families and carers in the UK and Ireland for the public benefit in particular but not exclusively by: 1. Providing support and advice regarding their genetic conditions 2. Providing funds for research into the genetic conditions and for equipment to assist with such research 3. To advance the education of the public in all matters concerning the genetic conditions Please note the charity is unable to give grants or loans to individuals to help their financial needs. We advise contacting a larger organisation
Pompe Support Network
Based in the United Kingdom, we are a network of individuals, families, scientists, and healthcare professionals who aim to improve the lives of all people living and working with Pompe disease. The network is run by members of the Pompe community, for the benefit of the Pompe community.