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
MedicAlert
MedicAlert Foundation is a registered charity: 233705. It provides medical identification services, including emergency help lines, ID bracelets, and related support for individuals with medical conditions. The organization offers membership services, educational resources, and support for patients and their families. It collaborates with healthcare providers and emergency services to ensure rapid response in medical emergencies. The foundation also engages in advocacy for patient safety and awareness, and maintains a website with comprehensive information and resources. MedicAlert Foundation is a registered charity: 233705. It provides medical ID jewelry and services to help ensure vital health information is instantly available in emergencies. The organization offers membership services, protection programmes, and support for individuals with medical conditions or allergies. It collaborates with emergency services, healthcare professionals, and partners such as NHS, Lions, and Fundraising Regulator. The charity aims to improve safety and confidence for vulnerable populations, including those with dementia, autoimmune diseases, allergies, and other medical conditions. It maintains a website with educational resources, membership options, and donation opportunities. The organization is involved in public awareness campaigns, member stories, and community engagement. It also offers the Herbert Protocol scheme for at-risk individuals, with data retention policies and privacy safeguards in place.
Cystinosis Foundation UK
The Cystinosis Foundation UK aims to: Provide support. We aim to provide support to all diagnosed with cystinosis, their families and relatives. Provide information. We shall provide relevant, accessable and up to date information about the disorder, as well as advice on specialist sources of help for new symptoms developing in patients. Publish newsletters. Up to date newsletters containing relevant information for patients and supporters will be produced regularly. Organise or participate in conferences relevant to cystinosis. We aim to publicise cystinosis to the medical profession (particularly paediatric consultants) so that those born with cystinosis are identified as soon as possible. Support research into the treatment of cystinosis. Work with cystinosis related charities worldwide to help co-ordinate research support, maintain awareness of new treatments and seek to understand more about metabolic disorders in general.
MPN Voice
MPN Voice is a registered charity focused on supporting individuals with myeloproliferative neoplasms (MPNs). Their activities include providing information, raising awareness, supporting patients through various programs, conducting research, and advocating for the MPN community. They offer educational resources, patient support services, and organize events and forums. They also engage in clinical research and trials, provide patient stories and testimonials, and maintain a strong online presence through their website and social media channels. As a charity, they are under the auspices of Guy's and St Thomas' Foundation, with registered charity number 1160316. MPN Voice is a registered charity under the auspices of Guy's and St Thomas' Foundation. It supports patients with myeloproliferative neoplasms (MPNs) through advocacy, education, support groups, research, and awareness campaigns. The organization provides patient education resources, hosts forums and events, and collaborates with healthcare professionals and research institutions. MPN Voice also engages in policy advocacy, clinical trial support, and fundraising activities to improve patient outcomes and quality of life. It maintains a website with extensive information on MPNs, treatments, and living with the condition, and actively promotes community engagement and patient empowerment.
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>
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!
パンキャンジャパン
NPO法人パンキャンジャパンは、すい臓がん（膵臓がん）に関する啓発、研究支援、政策提言、患者支援など多岐にわたる活動を行う日本の非営利団体です。2006年に設立され、膵臓がん撲滅を目指して、患者や家族、医療関係者と連携しながら情報提供や支援を展開しています。研究支援や啓発活動、政策提言を通じて、膵臓がんの早期診断・治療法の普及と患者のQOL向上に努めており、国内外の医療・研究機関とも連携しています。