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
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.
Digestive Cancers Europe
Digestive Cancers Europe is a patient advocacy organization dedicated to improving the lives of individuals affected by digestive cancers through advocacy, education, research, and support initiatives. They work to raise awareness, influence policy, and provide resources and support to patients and caregivers across Europe. The organization collaborates with healthcare professionals, researchers, and policymakers to advance understanding and treatment of digestive cancers, including colorectal, gastric, liver, pancreatic, and other rare cancers. They also focus on promoting early detection, personalized medicine, and access to innovative therapies. Their activities include publishing educational materials, organizing awareness campaigns, supporting research projects, and engaging in policy advocacy to improve patient outcomes and healthcare systems.
Contact
We were founded in the 1970s by families of disabled children, who recognised that even if their child’s conditions were different, they shared a common experience – of being a family with a disabled child. They understood how important it is to support each other. A lot has changed since then but some things haven’t changed nearly enough. There is a desperate lack of services and support for the 620,000 parents in the UK who care for a disabled child. As a result, families face a huge range of challenges and many feel isolated and alone. Coping with extra financial costs and practical challenges can put an enormous strain on daily life, with families more likely to face emotional issues, stress and anxiety. We are here for all families with disabled children – supporting families, bringing families together and helping families take action for others. Our vision is that families with disabled children feel valued and are strong, confident and able to make the decisions that are right for them.
OnkoMajak
Our mission is to raise the awareness of the general and specialist public about oncological diseases, their prevention, early diagnosis and treatment options. The goal is an informed and proactive public. We strive to reduce the incidence and mortality of oncological diseases not only through interactive educational experiences within the Gut Tour and Healthy Lungs roadshows. The domain of the roadshow is an inflatable model of the colon and lungs, which helps to understand the risks and causes of various diseases.
PIP UK
There are many children born in the UK and across the world with a rare syndrome called Poland Syndrome. Very little is known about Poland Syndrome and it’s hard to find the right people in the know in the medical community. At PIP-UK we want to change this situation and make sure people get access to the right information for them, at the right time! Our blog has videos on all sorts of things like how to tie shoelaces. There are stories which demonstrate that Poland Syndrome should not hold you back from anything!
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.