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
Rareminds
Rareminds is a registered charity in England and Wales, no. 1205120. Its mission is to provide affordable, timely access to highly specialised counselling for the rare disease community, and campaign for recognition of the importance of specialist mental health support by informing policy, practice, and promoting standards of excellence. It is partially funded by donations and sponsorship via unrestricted grants. Rareminds operates independently of companies and does not endorse any products. It does not have editorial or clinical control over content, activities, or service provision. The organization supports emotional wellbeing, counselling, training, consultancy, and awareness activities for the rare disease community.
Matthews Friends
We support patients, families and professionals by providing information, training, research and grants to develop Ketogenic services and support systems.
TEB Selbsthilfe Tumore und Erkrankungen der Bauchspeicheldrüse
The TEB Selbsthilfe is a non-profit organization founded in Baden-Württemberg, Germany, dedicated to supporting patients with tumors and diseases of the pancreas. It provides informational materials, brochures, patient support programs, advocacy activities, and educational resources. The organization collaborates with medical professionals, offers a helpline, regional groups, and participates in policy and research initiatives. It is supported by the Krebsverband Baden-Württemberg and is a founding member of the World Pancreatic Cancer Coalition. The organization aims to improve awareness, support, and research for pancreatic conditions.
Jeans for Genes
Jeans for Genes is the annual fundraising event for the genetic condition community. It organizes activities such as promoting fundraising events, providing educational materials, and supporting families affected by genetic conditions. The organization encourages participation through workplace, school, and community events, and offers resources like fundraising packs, wristbands, and promotional materials. It also engages with media and local press to raise awareness and supports fundraising through online shops, bank transfers, cheques, and digital platforms. The organization is involved in advocacy, education, and community support activities, aiming to fund research and support services for families affected by genetic conditions.
Action Duchenne
Action Duchenne is a patient advocacy group dedicated to supporting individuals and families affected by Duchenne muscular dystrophy (DMD) and Becker muscular dystrophy. The organization provides comprehensive support services, educational resources, and advocacy initiatives. Key activities include running a DMD Registry, offering family support programs (e.g., for mums, dads, grandparents, siblings, and age-specific groups for children and young adults), providing counselling, and addressing end-of-life and bereavement needs. They host an Annual International Conference to empower the Duchenne community through education, foster inclusivity, and drive comprehensive support, bringing together patients, families, clinicians, healthcare professionals, and industry representatives. Action Duchenne also disseminates news on Duchenne research and clinical developments, engages in policy advocacy, and offers educational content on Duchenne science and care.
Pancreas Hope
Mobilise patients, families and friends to collect and share their testimonies, make themselves heard and understood. Inform members of ESPOIR PANCREAS and the general public about advances in treatment Raise public awareness of pancreatic cancer Represent patients on ad hoc committees