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
Acute Leukemia Advocates Network (ALAN)
The [Acute Leukemia Advocates Network](https://acuteleuk.org/wp-content/uploads/2022/12/flyer_alan.pdf) (ALAN) is an independent global network of patient organisations, dedicated to changing outcomes of patients with acute leukemias by strengthening patient advocacy in that area. We aim to maximise the capacity of members within the network to allow us, together, to deliver tailored services to acute leukemia patients and carers on the national level. All whilst joining forces between organisations on the policy and research level across countries. ALAN is hosted under the umbrella of the [Leukemia Patient Advocates Foundation](https://www.lepaf.org/) (LePAF), a patient-led non-profit foundation based in Switzerland. As a foundation we connect leukemia patient organizations on all continents to strengthen advocacy work. The mission is to improve the lives and survival of patients affected by leukemia as well as their relatives by supporting leaders in providing help and support. ## OUR AIMS - Develop patient information and specific support for patients with acute leukemias and their carers in all countries - Strengthen patient organisations by sharing best practices and providing toolkits in patient advocacy - Create awareness about acute leukemias and how to better support leukemia patients - Advocate for better treatment, care & access to healthcare services - Improve education for healthcare professionals serving leukemia patients - Collaborate with other initiatives and stakeholders with similar goals
ACLT
The ACLT a leading Blood cancer/disorder charity dedicated to raising awareness of the severe shortage of donors on United Kingdom Stem Cell, Blood and Organ donor registers.
Chris Lucas Trust
Chris Lucas Trust for over 20 years in partnership with the Institute of Cancer Research (ICR) is funding research into Rhabdomyosarcoma. Headed by Professor Janet Shipley, in collaboration with the Royal Marsden Hospital (RMH). The ICR, together with its clinical partner, The Royal Marsden NHS Foundation Trust, forms the largest comprehensive cancer research centre in Europe.
Focus
Melanoma Focus is a national charity dedicated to providing help and support to melanoma patients and professionals as well as raising awareness of melanoma, the 5th most common cancer in the UK. For patients and their carers we provide the only Melanoma Helpline, run by experienced skin cancer nurses, specifically for anyone concerned about melanoma. Additionally, we have created a wide range of trusted patient information including the diagnosis and treatment of melanoma skin cancer and rare melanomas on our website and in booklet form. The Melanoma TrialFinder, a searchable resource has been designed to understand and locate potential clinical trials to discuss with a patient’s medical team.
UK Masto
We are a registered charity supporting people with mast cell diseases and their families. The group was founded in 2004 by Irene Wilson and became a registered charity in 2013. Support We support patients and parents of patients through our private web forums, by holding patient conferences and occasional regional meet-ups, and by providing one-on-one support when needed. Over the past fifteen years, hundreds of patients have supported each other and shared their experiences through our email group (soon to be superseded by our GDPR-compliant web forum). We help patients (and parents) learn to understand the conditions and help them to advocate for their needs in healthcare, in employment and in school. We provide educational materials for patients, families and their communities.