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Our mission is to improve the lives of those affected by CHAMP1 through clinical research, effective treatments, public awareness, early detection, family support and patient advocacy.
The Chromosome 18 Registry and Research Society (Europe) is a charity set up to bring European families affected by any chromosome 18 abnormalities together to share information and experiences. Our organisation covers all chromosome 18 abnormalities: 18q-, 18p-,Ring 18,Tetrasomy 18p and inversions of chromosome 18. The charity was founded by an affected woman, her mother and the grandparents of a young boy, all of whom lived near Glasgow. The organisation was registered as a charity in Scotland in 2009 (SC040399). We now have a committee of eight volunteers, all of whom are related to people affected by Chromosome 18 disorders.
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
We’re here to help people affected by pancreatic cancer make sense of their diagnosis and guide and support them every step of the way. Our friendly specialist nurses are only a call or email away for anyone affected by this disease. They are specialists in pancreatic cancer and can talk for as long as is needed. From tailored information on treatments, managing symptoms or coping with emotions, they can recommend practical steps and bring comfort and reassurance along the way. For many, they are a lifeline. The coronavirus pandemic has impacted us all in so many ways but for people with pancreatic cancer, we know it’s an especially worrying time. That’s why we’ve created a hub designed to give people facing pancreatic cancer during the pandemic up-to-the-minute information and guidance.