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.
Grace Kelly Childhood Cancer Trust
The Grace Kelly Childhood Cancer Trust was founded in 2016 in memory of four-year-old Grace. We fund research into rare and aggressive childhood cancers, educate families and clinicians about the signs and symptoms of childhood cancer and produce information booklets to explain to parents and children about the treatments they are facing. Locally, we provide financial, practical, and emotional support to families through our support service. Giving families a listening ear at the time when they need it most. Because no family should fight childhood cancer alone.
Childhood Interstitial Lung Disease Foundation
The Child Lung Foundation is a charity supporting children affected by childhood Interstitial Lung Disease (chILD). Established in 2010, it provides resources, support groups, and promotes research development. The organization aims to improve diagnosis, treatment, and quality of life for children with chILD, and offers educational resources, patient support services, and advocacy activities. It collaborates with medical professionals, researchers, and patient families to advance understanding and care of rare pediatric lung diseases.
Cancer Research UK
Cancer Research UK is a leading cancer research and awareness organization based in the United Kingdom. It focuses on cancer prevention, early diagnosis, treatment, and support for patients. The organization conducts and funds research, provides educational resources, and advocates for policy changes to improve cancer outcomes. It operates in multiple countries, including the UK, and collaborates with healthcare professionals, researchers, and policymakers. The organization offers a wide range of programs, including public awareness campaigns, patient support services, and professional education. It actively engages in policy advocacy and regulatory discussions related to cancer research and treatment. The organization maintains a strong online presence through its website and social media channels, providing accessible information and resources to the public and healthcare providers.
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
パンキャンジャパン
NPO法人パンキャンジャパンは、すい臓がん（膵臓がん）に関する啓発、研究支援、政策提言、患者支援など多岐にわたる活動を行う日本の非営利団体です。2006年に設立され、膵臓がん撲滅を目指して、患者や家族、医療関係者と連携しながら情報提供や支援を展開しています。研究支援や啓発活動、政策提言を通じて、膵臓がんの早期診断・治療法の普及と患者のQOL向上に努めており、国内外の医療・研究機関とも連携しています。