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
Pancreasnetvaerket
Pancreasnetværket is an organization dedicated to supporting patients with pancreatic cancer and their relatives. It provides guidance, support, and information about pancreatic cancer, including latest research, treatment options, and patient advocacy activities. The organization aims to ensure that all patients receive the best possible treatment and support. It is involved in patient education, support services, and advocacy campaigns. The organization is supported by Cancer Denmark and maintains contact through email and various programs.
Unique
The Rare Chromosome Disorder Support Group (Rare Chromo) is a UK-based charity dedicated to supporting individuals and families affected by rare chromosome and gene disorders. They provide information, support, and advocacy for affected individuals, their families, and professionals. The organization aims to raise awareness, promote research, and improve services related to rare genetic conditions. They organize events, webinars, and produce educational resources to enhance understanding and support for the community. Their activities include facilitating research collaborations, providing a helpline, and developing informational materials to empower affected families and raise public awareness. Unique is a small charity dedicated to supporting individuals and families affected by rare chromosome and gene disorders. It provides information guides, family resources, and promotes awareness through events and research collaborations. The organization offers free membership to families, professional membership for clinicians and researchers, and maintains a confidential offline database of affected members. Unique advocates for affected individuals, supports research, and works to improve understanding and management of rare genetic conditions. It also provides educational materials, support groups, and participates in policy and research initiatives. The organization is based in Surrey, UK, with a physical address at The Stables, Station Road West, Oxted, Surrey, RH8 9EE, and has a global membership.
Batten Disease Family Association
The BDFA’s mission is to enable everyone who is affected by Batten disease to live life to the full and secure the care and support they need until we find a cure. The BDFA offers informed guidance and supports families and professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a range of cures. The BDFA works across the rare disease sector to influence change in policy and processes as a collective voice.
DKMS Foundation
DKMS is a patient-focused organization dedicated to fighting blood cancer through stem cell donation, patient support, and advocacy. It operates in the UK and collaborates with various partners to facilitate blood stem cell transplants, provide patient support services, and promote awareness campaigns. The organization maintains a registry of donors, offers educational resources, and engages in research collaborations to improve treatment outcomes. DKMS also advocates for policy changes to enhance donor registration and access to treatments. It is involved in clinical trial support and works with regulatory bodies to ensure compliance and advance medical research. The organization is committed to increasing diversity in donor registries and supporting patients throughout their treatment journey.
Albinism Fellowship
Albinism Fellowship is a UK-based charity dedicated to supporting people affected by albinism and their families. Its mission includes raising awareness, providing information, advocating for individuals with albinism, and offering resources and community engagement through events, education, and membership. Core activities evidenced on the site include Understanding Albinism and FAQ for Albinism as educational resources, Other useful organisations as a resource hub, hosting events such as the Albinism Fellowship Conference, providing a contact channel via Get in Touch, and maintaining a presence through Membership, Podcast, Baby Boxes, and social media. The organization operates within the United Kingdom and has registered charity numbers in England & Wales (1196004) and Scotland (SC009443).
Champ 1 Foundation
Our mission is to improve the lives of those affected by CHAMP1 through clinical research, effective treatments, public awareness, early detection, family support and patient advocacy.