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
Bowel Cancer UK
We’re the UK’s leading bowel cancer charity. We’re determined to save lives and improve the quality of life of everyone affected by bowel cancer. Our vision is a future where nobody dies of the disease.
AMMF
AMMF (The Alan Morement Memorial Fund) is a UK-based charity dedicated to supporting research, raising awareness, and providing support for patients with cholangiocarcinoma (CCA). It develops comprehensive guidelines for diagnosis and treatment, funds research projects, and offers educational resources for patients and healthcare professionals. AMMF collaborates with international centers and advocacy groups to improve access to care and promote clinical research. The organization also engages in policy advocacy, hosts conferences, and maintains a network of advisors and experts in the field of liver and biliary cancers.
Barth Syndrome Foundation
The Barth Syndrome Foundation (BSF) is the only organization dedicated to saving lives around the world through education, advances in treatments, and finding a cure for Barth syndrome, a life-threatening genetic, multi-system disorder mostly affecting males. BSF provides vital information, credible resources, and supports research efforts to improve diagnosis, treatment, and quality of life for individuals with Barth syndrome. The foundation also advocates for regulatory approval of therapies, collaborates with healthcare providers and researchers, and offers community support and educational programs. The Barth Syndrome Foundation (BSF) is dedicated to saving lives around the world through education, advances in treatments, and finding a cure for Barth syndrome, a life-threatening genetic, multi-system disorder mostly affecting males. The foundation provides vital information, credible resources, and supports research initiatives. It engages in advocacy activities, offers patient and clinician resources, and fosters community support. The organization is involved in clinical trials, research funding, and policy advocacy. It maintains a comprehensive website with sections on research, family resources, diagnosis, and community engagement. The foundation also collaborates with international affiliates, partners, and medical advisory boards. It is committed to improving diagnosis, treatment, and quality of life for individuals with Barth syndrome and their families.
Pankind Australian Pancreatic Cancer Foundation
PanKind Australian Pancreatic Cancer Foundation is dedicated to improving outcomes for individuals affected by pancreatic cancer through groundbreaking research, compassionate support, and advocacy. Their mission is to triple survival rates by 2030 and enhance quality of life. They offer resources such as educational booklets, clinical trial information, and support services. The organization engages in advocacy, awareness campaigns, and provides support groups. They collaborate with healthcare professionals and have a focus on pancreatic cancer research, genetic testing, clinical trials, and patient support programs. They maintain a website with extensive resources and actively participate in policy and research initiatives. They also promote fundraising, community engagement, and partnerships to further their mission.
ACT for Cancer
ACT for Cancer is a registered charity in England and Wales with the registration number 1210147. Its office is located at Unit 3, 42 Orchard Road, London N6 5TR. The organization focuses on providing information and support related to cancer treatments, including innovative and off-label therapies, clinical trials, and patient decision-making. It aims to empower patients with trusted, doctor-reviewed information, facilitate clinician engagement in discussing non-standard treatment options, and support research into better cancer treatments. ACT for Cancer operates a comprehensive info hub that offers curated content on immunotherapies, genomic sequencing, clinical trials, and novel treatments. The organization also conducts qualitative research to understand the progress of patients pursuing innovative treatments and aims to improve treatments and quality of life for future patients.
Tuberous Sclerosis Association
The Tuberous Sclerosis Association (TSA) was launched in 1977 with a membership of 50 families and funds of just £25. We have grown from a round robin support letter to a professional organisation providing support to families affected by Tuberous Sclerosis Complex (TSC) across the UK. For our five year strategy of 2019-2023, our aim is to ‘REACH more people and drive more REseArCH.’ The TSA is a registered charity with three charitable objectives: To support individuals affected by TSC, together with their families or carers To encourage and support research into the causes and management of TSC To provide education and information We look to our past to retain our community spirit, but drive forward by pushing the boundaries of what a small and dedicated team is capable of achieving.