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
Action on Womb Cancer
Action On Womb Cancer (AWC) is a charity described through its website as a patient-focused organization that provides information, raises awareness, offers support services via groups, and conducts fundraising and research-related activities. The site navigation includes About Us, Patient Information, Awareness, Support Groups, Fundraising, and Research, indicating a focus on providing patient information resources, community support, fundraising campaigns (e.g., Yorkshire 3 Peaks Challenge), and involvement in research initiatives. The Events page demonstrates active fundraising efforts and encourages donations via JustGiving. A contact email is provided (contact@actiononwombcancer.org.uk). The presence of a dedicated Events and Research section suggests ongoing programmatic activity related to patient information, support, awareness, and research advocacy.
Cure CLCN4
Cure CLCN4 is a registered charity in England and Wales (1190344). It focuses on providing resources, support, and research related to CLCN4-related neurodevelopmental disorder. The organization offers patient and family resources, research funding, and community engagement activities. It maintains a patient registry, conducts research, and collaborates with scientific and medical communities to advance understanding and treatment of CLCN4 conditions. The organization also engages in advocacy, education, and awareness campaigns to support affected families and promote scientific research.
Pancreatic Cancer Europe
Pancreatic Cancer Europe (PCE) is a European multi-stakeholder platform that aims to bring together experts from across Europe, including academics, physicians, policymakers, patient groups, and journalists, with the shared goal of improving care for pancreatic cancer patients. The organization engages in advocacy, research, awareness campaigns, and policy work to address gaps in treatment, promote innovative therapies, and ensure equitable access to care. PCE collaborates with industry partners, healthcare professionals, and patient organizations to advance research, support patient needs, and influence healthcare policies at the European level. The organization also maintains a network of members, including patient advocates, medical professionals, and research institutions, and participates in European and international cancer and gastroenterology organizations.
Pitt Hopkins UK
In September 2013 the members of the Pitt Hopkins UK fundraising group knew of 33 cases of PTHS in the UK. In September 2014 we were in contact with at least 40. At our PTHS UK Day in July ’14, we heard that there were about 200 diagnosed people in the UK. This meant we had contact with about 1 in 5 of all cases already diagnosed in the UK. In June 2015 we had contact with over 60 families. Some of these new families came from the DDD study. In 2020 we have contact with about 100 families in the UK and Ireland and it is estimated there are 300 families diagnosed in the UK. We know there are many more families out there both diagnosed and undiagnosed. We hope to find them. If you are one of them please contact us.
Parkinson's Europe
Parkinson's Europe is the only European Parkinson's umbrella organisation. We have been championing and working with the global Parkinson’s community for nearly 30 years. As the leading voice for Parkinson’s in Europe, we provide trusted information; advance and share good practices; raise awareness and improve understanding of the condition; and facilitate research collaboration. Our vision is that people with Parkinson's and their families have access to the highest standards of treatment, support and care they need to live a full and comfortable life.
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.