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
VHL UK/Ireland
VHL UK / Ireland aims to raise funds via fundraising and donations for research, provide information and support for those affected and raise awareness. Registered charity in England and Wales 1160381, and Ireland 20101039. Charity Trust No: CT54346.
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.
Heartburn Cancer UK
Heartburn Cancer UK is a charity dedicated to raising awareness, supporting patients, and promoting early diagnosis of oesophageal and stomach cancers. They provide educational resources, support groups, patient stories, and advocacy activities. The organization aims to improve cancer survival rates through community engagement, professional collaboration, and research involvement. They operate in the UK and have a focus on conditions such as persistent heartburn, Barrett’s oesophagus, and oesophageal cancer. The charity also offers support services, educational programs, and participates in policy and regulatory engagement to influence healthcare practices.
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
Ataxia and Me
A non-profit organisation founded by a patient, and run by patients, helping to maximise the patient voice within the medical, health and pharma community
The Ehlers Danlos Society
The Ehlers Danlos Society is a global organization dedicated to improving the lives of people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). The society provides education, research funding, clinical resources, and advocacy to support patients, families, and healthcare professionals. It aims to increase awareness, promote diagnosis, and advance research to find better treatments and ultimately a cure for EDS and HSD. The society also offers support groups, patient stories, and community engagement initiatives to foster a strong network of individuals affected by these connective tissue disorders. The Ehlers Danlos Society is a patient advocacy organization dedicated to improving the lives of individuals with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). The organization focuses on research, education, support, and advocacy to raise awareness and improve diagnosis and management of these connective tissue disorders. It offers patient support programs, educational resources, and promotes research collaborations. The Society also engages in policy advocacy and provides a platform for patient stories and community engagement. It operates globally, with a focus on patient-centered initiatives, and collaborates with healthcare professionals, researchers, and other organizations to advance understanding and treatment of EDS and HSD.