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
Krabble UK
Krabbe UK is a charity registered in the UK, supporting families affected by Krabbe Leukodystrophy. We also champion research and raise awareness of the disease.
Eyes on the Future
We are a community who care for people affected by Inherited Retinal Dystrophies (IRDs), specifically those affected by RDH12 IRD. We are RDH12 patients, carers, families and friends, united in our drive to find a treatment. What we do We are the catalyst of focused efforts to find a cure for the condition. We deliver tangible progress towards its resolution. We bring together patients, scientists, industries and stakeholders. We accelerate research. Why we exist We want to help people to see for longer. Currently there is a gap between science – which has made a lot of progress into treating similar conditions – and what is available for our condition. We exist to fill this gap and to create awareness that it can be filled.
Reverse Rett
We’re working to improve the lives of children, young people, and adults with Rett Syndrome within the UK. We fund laboratory and clinical research into treatments and a cure, run the Rett Registry UK, support UK clinical trials of emerging treatments, and provide core funding for the CIPP Rett Centre based in London.
Melanoma Focus
Melanoma Focus is an expert organization dedicated to providing information, guidance, and support for patients, carers, and healthcare professionals affected by melanoma. They aim to stop melanoma and the suffering it causes through education, research, and advocacy. They offer specialist resources on melanoma stages and treatment, a confidential helpline staffed by expert skin cancer nurses, and organize multidisciplinary meetings and conferences for both patients and professionals. The charity also engages in fundraising activities and promotes sun safety awareness. Melanoma Focus is a patient advocacy organization dedicated to providing information, guidance, and support for patients, carers, and healthcare professionals affected by melanoma. They offer educational resources, support services, and promote melanoma research and awareness. The organization maintains a helpline, trial finder, and produces patient guides, guidelines, and educational videos. They are involved in melanoma staging, treatment, and clinical trials, and support the LGBTIQ+ community. Their activities include advocacy, education, research collaboration, and patient support programs. They also engage in policy and regulatory discussions and have a regional melanoma database project. The organization is committed to inclusivity and provides resources for rare melanoma types and bereavement support.
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Cancer Support France
Cancer Support France is a patient advocacy organization dedicated to providing support, information, and advocacy for individuals affected by cancer in France. They offer a helpline, support groups, educational resources, and community activities to improve the quality of life for cancer patients and their families. The organization collaborates with healthcare providers, researchers, and other charities to promote cancer awareness, support research, and influence health policies. They operate nationwide across France, engaging in advocacy campaigns, patient education initiatives, and volunteer programs. Their services include emotional support, practical assistance, and information dissemination to empower patients and caregivers. Cancer Support France is a national organization dedicated to providing support, information, and advocacy for cancer patients and their families in France. It offers a range of support services, including support groups, educational resources, and community activities. The organization collaborates with international cancer organizations and participates in policy advocacy to improve cancer care and patient quality of life. It maintains a network of local associations across France, facilitating access to support and information at the regional level. The organization also engages in public awareness campaigns and provides resources for cancer prevention, early detection, and survivorship. Cancer Support France is committed to fostering a supportive community for those affected by cancer and promoting research and policy initiatives to advance cancer care.
Cure Mito Foundation
The Cure SURF1 Foundation was founded in 2018 by a group of families determined to fight for our children’s lives. Each of us has a young child diagnosed with SURF1 Leigh syndrome. Each of us has been told by doctors that there is no treatment, no cure, and no hope. And each of us has refused to accept this as a final answer. In 2021, after successfully blazing the trail for SURF1 gene therapy at UTSW we decided to expand our efforts and changed the name of our foundation from the Cure SURF1 Foundation to the Cure MITO Foundation. Our primary focus is advancing research towards a cure for Leigh syndrome and eventually for mitochondrial disease as a whole. A successful outcome will mean not only hope for our own children, but also life-saving treatments for future generations impacted by this disease.