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
The Muscle Help Foundation
The launch pad for The Muscle Help Foundation (MHF) charity was a standalone project called pole2pole. Established by Michael McGrath and Miles Peckham (angel investor & expedition partner), an ambitious goal was set to journey to both the North & South Poles, with the goal to raise awareness & funds for Muscular Dystrophy (MD). Rooted in the idea that an experience if well executed can be transformational, the charity’s social currency was born – the rest as they say is history.
Jeans for Gene
The Jeans for Genes campaign raises awareness of the daily challenges faced by those living with a genetic condition and raises money to fund projects that make a tangible difference to the lives of those affected. Most importantly, the campaign: brings together the genetic condition community in order to make a loud noise about the issues that matter to them, shines a light on the organisations that work tirelessly to improve the lives of affected individuals; and celebrates the achievements of those living with a genetic condition.
RACC-UK
Patients with Rare Diseases “are faced with common challenges derived from the rarity of their conditions and aggravated by the low priority given to rare diseases globally. Rare diseases are often chronic, progressive, degenerative, disabling, and life-threatening. A long road to diagnosis, lack of adequate treatments and care are challenges faced by rare disease patients around the world” [Vision, mission & objectives – Rare Diseases International] Due to her own patient journey and the challenges she faced, RACC – UK was founded by Rachel Rimmer in 2017. Rachel was diagnosed at 16 years old with a Rare Autoinflammatory condition called Mevalonate Kinase Deficiency (HIDS), despite being symptomatic since birth. She graduated from Oxford Brookes University in 2014 with BA Hons in Early Childhood Studies. RACC – UK is led by an enthusiastic and motivated Board of Trustees with a range of professional backgrounds. The work is driven by patients, families, carers, and experienced medical professionals, in the fields of rheumatology, immunology and nephrology. RACC – UK is also represented by Rachel Rimmer as a RIPAG member of the European Reference Network, Rare Primary Immunodeficiency, Autoinflammatory and Autoimmune (RITA) diseases. In addition to this, RACC – UK are registered stakeholders for NHS Clinical Reference Groups relevant to Autoinflammatory conditions.
Myeloma UK
<p>We fund research work that looks to answer questions about the development, detection, and treatment of myeloma to help improve the future for people with myeloma.</p><p>We work with healthcare professionals to improve care and secure access to cutting-edge cancer treatments to give more choices to people being treated for myeloma.</p><p>We provide tailored information and support designed to help people with myeloma, their families and their friends live their lives to the full and manage their myeloma.</p>
Fight Bladder Cancer
We are so passionate about fighting bladder cancer because we’ve been there ourselves. We understand the challenges you face. We’re here to support you on your bladder cancer journey.
AAMAC
The Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC) is a leading funder of research into bone marrow failure diseases in Canada. Our volunteer-run organization supports patients and caregivers across the country who are living with aplastic anemia, myelodysplastic syndrome (also called MDS or myelodysplasia) and paroxysmal nocturnal hemoglobinuria (PNH).