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
Aplastic Anemia & Myelodysplasia Association of Canada
AAMAC funds research into bone marrow failure diseases such as aplastic anemia, PNH and MDS. The organization provides peer-to-peer support via telephone and email, educational materials, quarterly newsletters, and local support group meetings in various cities including Ottawa, London, Hamilton, Edmonton, Quebec, and Toronto. They also offer resources such as presentations, newsletters, articles, and emergency room cards. The organization is involved in clinical trials, with current trials conducted at Juravinski Cancer Centre, Princess Margaret Hospital, and Odette Cancer Centre. They engage in advocacy activities, provide patient education, and maintain a website with extensive resources.
Krabble UK
Krabbe UK is a charity registered in the UK, supporting families affected by Krabbe Leukodystrophy. We also champion research and raise awareness of the disease.
Osteogenesis Imperfecta Foundation
The mission of the OI Foundation is to improve the quality of life for those living with osteogenesis imperfecta through research, education, awareness and mutual support. The Osteogenesis Imperfecta Foundation, Inc., is a registered 501(c)(3) non-profit organization. Tax ID: 23-7076021. Information on this website may be reproduced provided a full citation of the source is given.
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Cancer Support France
Cancer Support France is a patient advocacy organization dedicated to providing support, information, and advocacy for individuals affected by cancer in France. They offer a helpline, support groups, educational resources, and community activities to improve the quality of life for cancer patients and their families. The organization collaborates with healthcare providers, researchers, and other charities to promote cancer awareness, support research, and influence health policies. They operate nationwide across France, engaging in advocacy campaigns, patient education initiatives, and volunteer programs. Their services include emotional support, practical assistance, and information dissemination to empower patients and caregivers. Cancer Support France is a national organization dedicated to providing support, information, and advocacy for cancer patients and their families in France. It offers a range of support services, including support groups, educational resources, and community activities. The organization collaborates with international cancer organizations and participates in policy advocacy to improve cancer care and patient quality of life. It maintains a network of local associations across France, facilitating access to support and information at the regional level. The organization also engages in public awareness campaigns and provides resources for cancer prevention, early detection, and survivorship. Cancer Support France is committed to fostering a supportive community for those affected by cancer and promoting research and policy initiatives to advance cancer care.
Tuberous Sclerosis Association
The Tuberous Sclerosis Association (TSA) was launched in 1977 with a membership of 50 families and funds of just £25. We have grown from a round robin support letter to a professional organisation providing support to families affected by Tuberous Sclerosis Complex (TSC) across the UK. For our five year strategy of 2019-2023, our aim is to ‘REACH more people and drive more REseArCH.’ The TSA is a registered charity with three charitable objectives: To support individuals affected by TSC, together with their families or carers To encourage and support research into the causes and management of TSC To provide education and information We look to our past to retain our community spirit, but drive forward by pushing the boundaries of what a small and dedicated team is capable of achieving.
Pancreas Hope
Mobilise patients, families and friends to collect and share their testimonies, make themselves heard and understood. Inform members of ESPOIR PANCREAS and the general public about advances in treatment Raise public awareness of pancreatic cancer Represent patients on ad hoc committees