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
Debbie Fund
Since the foundation of Debbie Fund in 2011 we’ve raised over £1m thanks to the generous support of donors and friends, the enormous efforts of individual fundraisers each year and our incredible corporate partners. From the initial Debbie Fund ball, to every step taken by our annual marathon runners, the money raised has been due to the hard work of hundreds of people Aside from our low admin costs, all of this money goes directly into research for new treatments for cervical cancer, most of which takes place at our lab at the UCL Cancer Institute. Over the past 10 years, the team of scientists at UCL, led by Professor Kerry Chester, have made amazing strides in both genomics research to better understand cervical cancer and in the development of antibodies to target cervical cancer cells. At this point in our research, it seems likely that this research will benefit not only cervical cancer treatments, but also the treatment of other rare cancers. Leveraging partnerships with other universities both in the UK and elsewhere, the team at UCL have made significant contributions in the form of research papers and knowledge sharing, taking steps every day to a world in which no woman dies of cervical cancer. Currently the team is in the process of finalising the antibody development, in the hope that we will soon be able to move the research into the next phase: clinical trials. This will be done with a commercial partner, and mark a significant milestone on the journey to new treatments for cervical cancer
Eurordis
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 300 million people living with a rare disease globally. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.
Avery's Hope
Avery’s Hope provides financial assistance to the rare, ultra rare and undiagnosed pediatric GI patient families facing out-of-pocket and insurance denied expenses.
FOP Friends
FOP Friends’ aim is to further research into Fibrodysplasia Ossificans Progressiva (FOP) and related conditions by supporting current and future research projects, and support those living with FOP and their families. 2009 seems such a long time ago when our family was given the news that our first child, Oliver, had been born with fibrodysplasia ossificans progressiva (FOP). He was just one year old at the time. At that time there was a small patient group, FOP Action, but no UK charity dedicated to supporting FOP families and funding research. Along with our family and friends, we ran fundraising events to support research and raise awareness of FOP. Through this, we encountered barriers to accessing further help and funding from companies and organisations, so decided to become a fully registered charity. We received full charitable status in 2012.
Dravet Foundation
We are committed to carrying out our activity in a TRANSPARENT manner, promoting HONESTY and INTEGRITY in all our actions. We look to the future through INNOVATION, through the development of new avenues of research.
Vasculitis UK
Everything is to be found here about Vasculitis UK, the charity: our aims, goals and objectives, the history, the people who run it, our finances, how you can join and how you can support and be involved in running Vasculitis UK. There is a section here on fundraising and on setting up a local vasculitis support group.