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 Parkinson ASBL
Action Parkinson développe et anime un lieu de rencontre, d’information sur la maladie de Parkinson et aussi d’activités physiques adaptées, à Ixelles, près de la place Flagey.
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
Joining Jack
Joining Jack was officially launched with the Charity Commission by Alex and Andy Johnson, the proud parents of Jack, in July 2012 – less than nine months after their world fell apart when their son, three months short of his 4th birthday, was diagnosed with Duchenne Muscular Dystrophy, an incurable muscle-wasting condition for there is currently no cure. In 2022 Joining Jack celebrates 10 years of campaigning, fundraising, lobbying and investing in research to bring the best possible treatments with the best possible outcomes for ALL boys living with Duchenne.
Ataxia and Me
A non-profit organisation founded by a patient, and run by patients, helping to maximise the patient voice within the medical, health and pharma community
Osteogenesis Imperfecta Foundation
The mission of the OI Foundation is to improve the quality of life for those living with osteogenesis imperfecta through research, education, awareness, and mutual support.
VHL UK Ireland
To relieve the charitable needs of persons who have von Hippel-Lindau Syndrome (VHL) and similar genetic conditions such as Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) and Birt-Hogg- Dubé Syndrome (BHD) and their families and carers in the UK and Ireland for the public benefit in particular but not exclusively by: 1. Providing support and advice regarding their genetic conditions 2. Providing funds for research into the genetic conditions and for equipment to assist with such research 3. To advance the education of the public in all matters concerning the genetic conditions Please note the charity is unable to give grants or loans to individuals to help their financial needs. We advise contacting a larger organisation