Helping patients find information when they are discovering their disease
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Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
Action Kidney Cancer
<p>The United Kingdom’s only patient-led kidney cancer charity</p> Action Kidney Cancer is the UK’s largest and most active patient-led kidney cancer charity. It provides support, information, and a caring, knowledgeable community for patients, survivors, and those affected by kidney cancer. The organization offers a helpline, patient support forum, community map, patient groups, and patient information days; hosts educational resources such as essential guides to kidney cancer, information on treatments, help sheets, and materials to support shared decision-making; and facilitates campaigns, fundraising, and involvement in advocacy. It is a registered charity in England, Wales, and Scotland, with headquarters in Manchester, United Kingdom, and maintains partnerships and resources to assist kidney cancer patients and families, including online and in-person programs.
Stiff Person Syndrome Support and Charity
<p>This site is solely for the support of those suffering from Stiff Person Syndrome (SPS). Family and friends of sufferers are also welcome to the same support. The site may also be of interest to caregivers, care professionals, researchers (together with advocates for the condition) and the general public.</p><p>------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------</p> Stiff Person Syndrome Support Group and Charity, founded in 1998 by Liz Blows, is a UK-based not-for-profit organization dedicated to supporting individuals with Stiff Person Syndrome (SPS). The organization provides information, advocacy, support services, and promotes research into SPS. It aims to raise awareness of SPS, offer patient support, and facilitate research collaborations. The charity operates in the UK and Ireland, with a physical address at 75 Normandy Avenue, Beverley, East Yorkshire, HU17 8PF. It has a charity registration number 1099206. The organization engages in various activities including hosting conferences, supporting patient stories, and maintaining an online presence through social media platforms such as Facebook, Twitter, Instagram, and LinkedIn. The organization also provides educational resources, supports research publications, and collaborates with medical and research institutions. Key personnel include Liz Blows (Chair). The charity is actively involved in policy advocacy, research funding, and community engagement to improve the lives of SPS patients.
ACT for Cancer
ACT for Cancer is a registered charity in England and Wales with the registration number 1210147. Its office is located at Unit 3, 42 Orchard Road, London N6 5TR. The organization focuses on providing information and support related to cancer treatments, including innovative and off-label therapies, clinical trials, and patient decision-making. It aims to empower patients with trusted, doctor-reviewed information, facilitate clinician engagement in discussing non-standard treatment options, and support research into better cancer treatments. ACT for Cancer operates a comprehensive info hub that offers curated content on immunotherapies, genomic sequencing, clinical trials, and novel treatments. The organization also conducts qualitative research to understand the progress of patients pursuing innovative treatments and aims to improve treatments and quality of life for future patients.
Dancing Eye Syndrome Support Trust
The Dancing Eye Syndrome Support Trust, established in 1997, provides mutual support and encouragement to parents of children diagnosed with Dancing Eye Syndrome (Opsoclonus-Myoclonus Syndrome). It offers a platform for parents to connect, share experiences, and access information through meetings and newsletters. The trust also produces educational resources for families and supports research and awareness efforts related to the condition. It arranges meetings for members, produces informational materials, and provides contact details for neurology specialists for adults with childhood-onset OMS. Providing support and information to families of children with Dancing Eye Syndrome. OMAS or Dancing Eye Syndrome is a rare autoimmune condition affecting young children, characterized by rapid eye movements, jerking movements, and loss of balance. Most children are diagnosed around 18 months, with a prevalence of 1 in 5 million children worldwide. The syndrome is often triggered by a neuroblastoma tumor or viral infection. Symptoms include opsoclonus, myoclonus, ataxia, speech difficulties, sleep problems, behavioral issues, hypotonia, and vomiting. Treatment involves immunotherapy, corticosteroids, IVIg, rituximab, and possibly surgery for tumors. The cause varies by age, with neuroblastoma in young children and idiopathic or viral causes in older children. The organization was established in 1997, providing support, raising awareness, and hosting conferences. Contact: support@dancingeyes.org.uk, Tel: 07746 129950. The trust is involved in fundraising, awareness campaigns, and community support.
Selbsthilfe Pankreaskarzinom
Selbsthilfe Pankreaskarzinom is an organization providing resources, information, and support for individuals affected by pancreatic cancer. They offer downloadable brochures on various topics related to pancreatic cancer, including disease information, treatment options, patient rights, and complementary medicine. The organization aims to educate, support, and advocate for patients and their families, promoting awareness and understanding of pancreatic cancer. They also facilitate community engagement through events like World Pancreatic Cancer Day and provide contact information for assistance and inquiries.
El Faro - Fundación Colombiana de Leucemia y Linfoma
<p>Fundación Colombiana de Leucemia y Linfoma is a nonprofit organization dedicated to supporting patients with leukemia and lymphoma in Colombia. The organization provides educational resources, patient support programs, advocacy, and promotes research collaborations. It also engages with regulatory bodies and partners with pharmaceutical companies and other organizations to improve patient outcomes.</p> El Faro - Fundación Colombiana de Leucemia y Linfoma, also known as Fundacion Colombiana de Leucemia y Linfoma, is a non-profit organization founded in June 2007 by Yolima Méndez Camacho. It aims to provide emotional, psychosocial, informational, and support services to patients with leukemia, lymphoma, multiple myeloma, and other hematologic-oncological diseases, as well as their families and caregivers in Colombia. The organization offers a range of programs including patient support, education, advocacy, and research. It collaborates with hospitals and healthcare providers across Colombia, including Bogotá, and maintains a website with extensive resources, publications, and news related to hematologic cancers. The organization emphasizes respect, solidarity, autonomy, transparency, professionalism, and human quality as core values. Its mission is to be a reference center in Colombia for supporting children, young people, and adults living with blood cancers, providing support and information, and advocating for patient rights.