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
Hope for Hypothalamic Hamartomas
Hope for Hypothalamic Hamartomas is dedicated to supporting research into hypothalamic hamartomas (HH), a rare brain disorder characterized by lesions in the ventral hypothalamic region. The organization funds and awards research grants, facilitates international symposia, and collaborates with leading medical and research institutions worldwide. Their research initiatives include genomic profiling, functional MRI studies, animal model development, and genetic research to better understand HH etiology, diagnosis, and treatment options. They actively support scientific exchange through conferences and publish research articles. The organization also engages in advocacy, provides educational resources, and partners with medical professionals and institutions to advance HH research and treatment.
Unique
The Rare Chromosome Disorder Support Group (Rare Chromo) is a UK-based charity dedicated to supporting individuals and families affected by rare chromosome and gene disorders. They provide information, support, and advocacy for affected individuals, their families, and professionals. The organization aims to raise awareness, promote research, and improve services related to rare genetic conditions. They organize events, webinars, and produce educational resources to enhance understanding and support for the community. Their activities include facilitating research collaborations, providing a helpline, and developing informational materials to empower affected families and raise public awareness. Unique is a small charity dedicated to supporting individuals and families affected by rare chromosome and gene disorders. It provides information guides, family resources, and promotes awareness through events and research collaborations. The organization offers free membership to families, professional membership for clinicians and researchers, and maintains a confidential offline database of affected members. Unique advocates for affected individuals, supports research, and works to improve understanding and management of rare genetic conditions. It also provides educational materials, support groups, and participates in policy and research initiatives. The organization is based in Surrey, UK, with a physical address at The Stables, Station Road West, Oxted, Surrey, RH8 9EE, and has a global membership.
European Tuberous Sclerosis Complex Association
Established in 2012, ETSC is a federation of Tuberous Sclerosis Associations. ETSC believes in total “patient experience” and that interaction with all healthcare providers and relative agencies is paramount. Objectives • Increase knowledge and awareness on TSC • Promote implementation of European and International diagnostic criteria, surveillance and treatment guidelines • Stimulate research on TSC • Interest European and International organisations in the welfare of those with TSC and their families • Exchange information of mutual interest between associations. Aims • Total patient experience and interaction in each individual country with all healthcare providers and agencies • Uniting TSC Associations to ensure knowledge and surveillance on our rare disorder and orphan drugs are increased • Good working relationships with Pharma and the inclusion of representatives from National Organisations in information and education on Clinical trials and any new drugs being developed for use with our rare disease • Vigilance on protocols and new drugs
Jo’s Cervical Cancer Trust
Jo’s Cervical Cancer Trust went into liquidation in Spring 2024 and has closed. The charity no longer exists and content has been gifted to The Eve Appeal, which now provides current information on cervical cancer, screening and HPV on eveappeal.org.uk. Jo’s Cervical Cancer Trust went into liquidation in Spring 2024 and has closed. The charity no longer exists and all its content, social media and online channels are not in operation. All content from Jo’s original website was gifted to The Eve Appeal and they have incorporated that information which is now available on: https://eveappeal.org.uk/, this is where you will find all current information on cervical cancer, screening and HPV. If you have any questions about screening, test results or HPV and would like to speak to a nurse, please contact The Eve Appeal’s nurse led information service, Ask Eve, on 0808 802 0019 – free to call from landlines and mobile phones – or email nurse@eveappeal.org.uk. You can find The Eve Appeal on: Website: https://eveappeal.org.uk, Instagram: www.instagram.com/eveappeal/, Facebook: www.facebook.com/eveappeal, LinkedIn: www.linkedin.com/company/the-eve-appeal
Mind Over Cancer
Mind Over Cancer is a charity that supports the mental health of young people diagnosed with cancer between the ages of 0 and 29, as well as their families and support networks. It aims to promote and protect mental health by providing or assisting in the provision of counselling services and mental health support programs. The organization is made up of experts in cancer care and mental health who identified a lack of mental health provisions for young cancer patients. It offers mental health support, counselling, drop-in services, support programs, and online support groups across East Anglia. The charity also engages in advocacy, fundraising, and community support activities. It has a registered charity number 1192034 and is committed to supporting young people and their families through their cancer journey.
Mummy's Star
Mummy's Star is a registered charity providing support for women diagnosed with cancer during pregnancy, within 12 months of giving birth, or experiencing baby loss during pregnancy or in the 12 months prior. They offer emotional, financial, practical, and end-of-life support, along with educational resources, advocacy campaigns, and professional support for healthcare providers. The organization also engages in research, policy advocacy, and collaborates with various partners. They operate in the UK and have a broad range of programs and services aimed at supporting patients and families affected by cancer in pregnancy.