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
Epilepsy Action
Find out what it means to be a national charity committed to supporting a better life for everyone affected by epilepsy.
Action for XP
Action for XP is a UK-registered charity focused on Xeroderma pigmentosum (XP). The organization provides patient and family support, awareness, education, resources, and advocacy related to XP. It offers project-based initiatives and several support and information hubs to assist people affected by XP, including Project Breakaway and Little Ted, as well as services such as Supporting You, the Action Advice Hub, and the Schools Hub. The charity aims to connect the XP community, raise awareness, share XP-related information, and provide accessible resources and outreach through its website and programs. Headquarters are listed in Aberdeenshire, United Kingdom, with charity registration details noted (Charity No SC045465). Action for XP is a charity dedicated to supporting individuals and families affected by Xeroderma Pigmentosum (XP). The organization operates across the UK and internationally, providing free services such as UV protection guidance, protective equipment, counselling, and family support. They organize community events, awareness campaigns, and collaborate with medical professionals and industry partners to advance research and improve quality of life for those with XP. The charity also engages in educational initiatives, advocacy, and fundraising activities to sustain and expand their support network. They have a strong focus on patient-centered care, education, and raising awareness about XP and related rare genetic conditions.
Association for Glycogen Storage Disease (UK) Limited
We help individuals and families affected by Glycogen Storage Disease (GSD) by putting people in contact, providing information and support, publishing a magazine and holding conferences, workshops, courses and family events.
The Aarskog Foundation
The Aarskog Foundation is a global alliance of people living with Aarskog Syndrome (AS) X-Linked inherited. The Aarskog Foundation brings together National and International Aarskog Syndrome patients from around the world to create a global alliance of patients and families faced with common challenges derived from the uniqueness of this RARE Genetic condition. Addressing Aarskog Syndrome is vital in order for it to be recognised as a disability across all governing bodies to ensure all Aarskog patients have access to the same resources as any other person. Patients living with Aarskog Syndrome come together through The Aarskog Foundation in a structured environment to create an Aarskog community and a voice through advocacy and exchange experiences. To this end we aim to unite, expand and put Aarskog Syndrome on the agenda of organisations and institutions both in the UK and across the world.
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.
Hrvatska udruga leukemija i limfomi (HULL)
<p>The association works with the aim of helping patients suffering from hematological diseases, developing new research programs and treatment methods, and to this end undertakes the following activities:</p><ul><li>Organizes the treatment of patients suffering from leukemia, lymphoma, and related diseases.</li><li>Collects donations, and develops and implements programs to help patients suffering from leukemia, lymphoma, and related diseases.</li><li>Encourages new methods of treatment, and limits professional and financial assistance for these programs.</li><li>Supports programs to help patients and their families.</li><li>Supports research work in the field of etiology, therapy, and treatment of leukemia, lymphoma, and related hematological diseases.</li><li>Develops unrelated bone marrow transplantation programs in the Republic of Croatia.</li><li>Organizes seminars and consultations, and distributes information from these meetings to health and scientific institutions.</li></ul>