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Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
IPOPI
IPOPI is an international non-profit association registered in Belgium; it aims to improve the lives of people with primary immunodeficiencies (PIDs) worldwide. The organization operates through a strategic plan and network of member organizations to advocate for early diagnosis and optimal care, PID awareness, and stakeholder collaboration. IPOPI conducts work on PID-related awareness, early diagnosis and care, NMO support within NMOs, and provides patient-focused resources and tools (Leaflets, publications, and the PID Life Index). It maintains corporate sponsor relationships and programmatic initiatives such as early diagnosis and care, PID awareness, and NMO-related support. IPOPI (International Patient Organisation for Primary Immunodeficiency) is an organization dedicated to improving the lives of patients with primary immunodeficiencies worldwide. It engages in advocacy, education, and support activities, collaborates with stakeholders, and promotes awareness and early diagnosis of PIDs. IPOPI maintains a network of experts, produces educational materials such as leaflets, and is involved in policy and research initiatives. The organization is based in Belgium, with a focus on global impact, and has partnerships with corporate sponsors. It provides resources for patients and healthcare professionals, and actively participates in policy and clinical development activities.
Arbeitskreis der Pankreatektomierten e. V.
The Arbeitskreis der Pankreatektomierten e. V. (AdP) is a self-help organization founded in 1976, dedicated to supporting patients with pancreatic diseases, especially pancreatic cancer. It aims to promote health and rehabilitation for those who have undergone partial or total pancreatectomy, as well as non-operated pancreatic disease patients. The organization provides current information, facilitates experience exchange, and conducts educational work. It has over 1,550 members and collaborates with medical professionals and organizations. The AdP offers support for diagnosis, therapy, and follow-up, and advocates for early detection and research in pancreatic diseases. It is based in Bonn, Germany, and is supported by the German Cancer Aid. The Arbeitskreis der Pankreatektomierten e. V., also known as ADP e.V., is a patient self-help organization based in Bonn, Germany. It focuses on supporting individuals who have undergone pancreatic surgery, providing resources, advocacy, and community support. The organization offers informational documents, support networks, and educational materials for patients and their families. It engages in activities such as maintaining a forum, hotline, and distributing downloadable resources. The ADP e.V. collaborates with medical professionals and other organizations to improve patient care and awareness of pancreatic diseases. Its activities include advocacy campaigns, patient education initiatives, and supporting research collaborations. The organization is committed to empowering patients through information and community engagement, aiming to improve quality of life and treatment outcomes for those affected by pancreatic conditions.
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.
Jeans for Genes
Jeans for Genes is the annual fundraising event for the genetic condition community. It organizes activities such as promoting fundraising events, providing educational materials, and supporting families affected by genetic conditions. The organization encourages participation through workplace, school, and community events, and offers resources like fundraising packs, wristbands, and promotional materials. It also engages with media and local press to raise awareness and supports fundraising through online shops, bank transfers, cheques, and digital platforms. The organization is involved in advocacy, education, and community support activities, aiming to fund research and support services for families affected by genetic conditions.
African Caribbean Leukaemia Trust (ACLT)
The African Caribbean Leukaemia Trust (ACLT) is dedicated to registering stem cell, blood, and organ donors, especially focusing on diversifying donor registers to include more Black heritage donors. They work in partnership with organizations like NHS Blood & Transplant, Anthony Nolan, and DKMS to encourage registration and donation. ACLT does not directly take donations but promotes registration drives, volunteer programs, fundraising, and sponsorship to support their mission of saving lives through donor registration. They also highlight the importance of blood and stem cell donations for patients of all ethnicities, with a particular emphasis on supporting patients of Black heritage who require closely matched donors. The organization is involved in advocacy, awareness campaigns, and community engagement to increase donor diversity and support patients with blood cancers and disorders.
Mummy's Star
Mummy's Star is a registered charity providing support for women diagnosed with cancer during pregnancy, within 12 months of giving birth, or experiencing baby loss during pregnancy or in the 12 months prior. They offer emotional, financial, practical, and end-of-life support, along with educational resources, advocacy campaigns, and professional support for healthcare providers. The organization also engages in research, policy advocacy, and collaborates with various partners. They operate in the UK and have a broad range of programs and services aimed at supporting patients and families affected by cancer in pregnancy.