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Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
Fabry International Network
Since Fabry disease is a rare genetic disorder, and since there are thousands of rare diseases, it’s hard for individual patients and caregivers to be heard. Therefore, when striving for better care and cure for Fabry patients, we need them to join forces and speak out. That’s where FIN comes in: an independent and vibrant network of Fabry patient associations whose purpose is to collaborate, communicate and promote best practice to support those affected by Fabry disease. We back 60 patient organizations in 57 countries. We connect health professionals and we ally with industry partners. We envision a world where every single person affected by Fabry disease has the best quality of life possible through early diagnosis, treatment and cure. Our mission, therefore, is to empower Fabry patients all over the world. FIN is a non-profit organisation registered in The Netherlands. The administrative support is based in Belgium. The Board of Directors meet regularly either online or face-to-face. In addition, they hold regular meetings with the industry partners and medical advisors.
PKD Charity
Founded in 2000, we’re the first and only UK charity solely dedicated to improving the lives of an estimated 70,000 individuals and their families affected by polycystic kidney disease (PKD) in the UK. PKD is a range of life-threatening inherited conditions that can cause kidney failure and affect other organs in the body such as the liver, brain, heart and bowels. Most people with PKD live with an uncertain prognosis, intermittent pain and infections, and then have to undergo life-saving dialysis or transplant in their 50s. A few babies have a rare form of PKD which results in death during pregnancy or shortly after birth; the surviving children often have to have either a kidney or liver transplant before the age of 10. We provide reliable, accredited information, advice and personalised support. We raise awareness of the burden of PKD, both clinical and psychosocial. We fund research aimed at understanding more about PKD and the discovery of therapies that will improve quality and longevity of life.
Fondation A.R.C.A.D
A.R.CA.D Foundation is a French research and patient advocate non-profit charity founded in 2006. It works on different levels nationally and internationally to raise awareness, provide education and advocate for the prevention, treatment and cure of gastrointestinal cancers.
Pankind Australian Pancreatic Cancer Foundation
PanKind Australian Pancreatic Cancer Foundation is dedicated to improving outcomes for individuals affected by pancreatic cancer through groundbreaking research, compassionate support, and advocacy. Their mission is to triple survival rates by 2030 and enhance quality of life. They offer resources such as educational booklets, clinical trial information, and support services. The organization engages in advocacy, awareness campaigns, and provides support groups. They collaborate with healthcare professionals and have a focus on pancreatic cancer research, genetic testing, clinical trials, and patient support programs. They maintain a website with extensive resources and actively participate in policy and research initiatives. They also promote fundraising, community engagement, and partnerships to further their mission.
Oncoguia
<p>Oncoguia seeks to strengthen, encourage, and guide people living with cancer to face their challenges in the best way possible. We are a non-governmental organization (NGO) that works tirelessly to inform, support, and defend the rights of cancer patients. Our goal is to provide quality information and support to patients, their families, and the general public to improve their quality of life.</p>
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>