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
Annabelle's Challenge
Annabelle’s Challenge aims to promote awareness and medical research into the rare, life-threatening and incurable genetic condition Vascular Ehlers-Danlos Syndrome (vascular EDS).
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.
CDH UK
We like to think of CDH UK as a modern charity made up of experts providing complimentary care to patients and their families in the form of information, emotional and practical support and by conducting, encouraging and funding research. We are an independent leading CDH organisation consisting of patients, families, friends and medical professionals affected by Congenital Diaphragmatic Hernia (CDH) and the very first to be registered and based in the UK. We currently have offices in the North and South of England and a great team of Trustees and volunteers up and down the UK. We also work internationally on research projects and through official networks helping to mentor others to provide support and resources in their own nations and to encourage meaningful collaborations.
Hope for HH
ope for Hypothalamic Hamartomas (Hope for HH) is a volunteer-based nonprofit organization founded by parents of children with hypothalamic hamartomas (HH). Our goal is to create a single, credible source for information about the diagnosis, treatment, and support of individuals with HH. Every family touched by this rare disorder has a unique and often heart-breaking story of how they attained a correct diagnosis. Obtaining a correct diagnosis can take months and even years and often involves incorrect diagnoses. Once a diagnosis is confirmed, many families struggle with choosing an appropriate course of treatment, if one is even available. Regardless of treatment, managing the daily lives of HH patients and dealing with the long term and frequently devastating effects of HH requires ongoing information and support.