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
Fight Bladder Cancer
Fight Bladder Cancer is a UK-based charity founded and run by bladder cancer survivors and their families. It supports anyone affected by bladder cancer, raises awareness, supports medical research, and campaigns for policy change to improve bladder cancer treatments. Fight Bladder Cancer is a charitable organization dedicated to supporting individuals affected by bladder cancer through education, advocacy, research, and patient support services. They provide resources for patients, carers, and healthcare professionals, including informational materials, support groups, and campaigns to raise awareness about bladder cancer. The organization also engages in policy advocacy, collaborates with medical and research institutions, and promotes early detection and treatment options. Their activities include publishing reports, conducting research, and organizing community events to improve patient outcomes and increase public understanding of bladder cancer.
Maggie's
Maggie's provides free cancer support and information in centres across the UK and online. They offer professional staff, help with money worries, support for friends and family, support groups, courses and workshops, and resources for managing emotions, practical challenges, symptoms and side effects, and social aspects of living with cancer. They also provide specific support for carers and those dealing with bereavement. Their services aim to help people live well with cancer. Maggie's is a cancer support organization providing free support services to individuals affected by cancer, including children, young people, and their families. They offer individual support, family support, support groups, psychology sessions, and signposting to other organizations. Their services are available at Maggie's centres across the UK and internationally. They also provide educational resources, advocacy activities, and community engagement. Maggie's is committed to supporting children and young people affected by cancer, offering tailored support and resources for teachers and group leaders. The organization is based in Glasgow, Scotland, and operates in multiple countries. It was established in 1995. Maggie's is a registered charity in Scotland with charity number SC024414.
CDH UK
CDH UK is a registered charity in England and Wales (no. 1106065) and Scotland (no. SC042410). It focuses on supporting research and providing support for individuals affected by Congenital Diaphragmatic Hernia (CDH). The organization offers patient support, advocacy, and research funding to improve outcomes and awareness of CDH. It engages in public education, supports families, and collaborates with medical professionals to advance treatment and understanding of CDH. CDH UK is a registered charity focused on Congenital Diaphragmatic Hernia (CDH). The organization provides comprehensive information about CDH, including diagnosis, what to expect during pregnancy and birth, post-natal care, surgical repair, possible outcomes, and emotional support. They offer various support services such as counselling, practical help (Home 2 Hospital, Help 4 Home, Help 4 Holidays), ongoing support, and resources for transition of care. CDH UK is actively involved in research, collaborating with researchers, PhD students, and healthcare professionals on research programmes and conducting in-house studies and surveys. They also publish research articles and provide educational materials like information booklets, magazines, and explainer graphics for patients, families, and carers. The charity is supported by patrons and a medical advisory panel, and engages in fundraising activities to support its mission.
Cancer Support UK
<p>We provide practical and emotional support to people with cancer, during and after the treatment period.</p><p>We support people with all kinds of cancer across the UK. Our services are designed and delivered by people who have experienced cancer themselves – to improve the experience of others.</p> Cancer Support UK is a UK-based charity dedicated to supporting cancer patients and their families throughout the cancer journey. It emphasizes emotional and practical support, including free Cancer Coach programs (peer group support, digital learning, and Focus Forwards workshops) for adults who have completed cancer treatment. The organization offers Cancer Kits and workplace training, signposting, and educational resources, and invites donations and involvement through volunteering and referrals. The site notes impact such as helping 4,952 people in 2020 and highlights storytelling and shared experiences to raise awareness of its services. Core activities include running Cancer Coach programs (peer groups online or by phone, digital learning, and focused workshops), providing educational resources and materials (Cancer Types, Signposting, Resources), offering cancer-related patient support services, and broader fundraising and outreach efforts.
Pancreatic Cancer Canada
Pancreatic Cancer Canada is dedicated to raising awareness, supporting patients and families, funding research, and advocating for improved treatments and early detection of pancreatic cancer. The organization provides patient and family support services, educational resources, and hosts events and fundraisers across Canada. It aims to increase survival rates through education, advocacy, and research funding. The organization is based in Toronto, Ontario, and operates nationwide, engaging in public awareness campaigns, clinical research support, and policy advocacy. It collaborates with healthcare providers, researchers, and community partners to advance pancreatic cancer care and research. Pancreatic Cancer Canada is a patient advocacy organization dedicated to providing support, raising awareness, and improving outcomes for individuals affected by pancreatic cancer. They offer educational resources, support services, advocacy campaigns, and information on treatment options and research. The organization engages in public awareness initiatives such as Pancreatic Cancer Awareness Month and collaborates with partners like Wellspring and AstraZeneca. They maintain a presence on social media platforms including Facebook, Twitter, Instagram, and YouTube. Their contact information includes a phone number, email, and physical address in Toronto, Canada. They focus on supporting patients and families through various programs, educational materials, and peer support, and are involved in advocacy and research activities.
Rarebeacon
Beacon for rare diseases is a UK-based charity that hosts events and community activities for the rare disease community. The organization offers events such as patient group trainings, masterclasses, and conferences, and maintains an events calendar featuring both online and in-person formats. They emphasize accessibility of events and state that events are designed for all stakeholders in the rare disease community, with at least one target audience being rare disease patient groups. The site footer provides the organization’s address in Cambridge, charity and company registration details, and a contact email for the projects team (projects@rarebeacon.org). Rarebeacon, now known as Beacon for Rare Diseases, is a UK-based organization dedicated to supporting and advocating for individuals with rare diseases. Founded in 2012, it provides resources, research, and community support to improve the lives of patients and their families. The organization engages in public education, policy advocacy, and collaborates with research institutions. It offers patient support programs, educational resources, and hosts events and campaigns to raise awareness about rare diseases. Its activities include publishing impact reports, facilitating patient and caregiver networks, and promoting research and drug development in the rare disease field. The organization operates primarily in the UK but has a global outreach through its online platforms and partnerships.