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
OGsupport.uk
<h1>Support Group for Oesophageal and Gastric Patients</h1> <p>We are a patient support group for Oesophageal-Gastric cancer patients, running online and face-to-face support groups.</p> <p>Please contact the local organiser for details.</p> <h2>Location and Meetings</h2> <p>Guildford - In-person meetings are held at The Holiday Inn, Egerton Road, Guildford</p> <h3>Who Can Attend?</h3> <ul> <li>Current and former oesophageal or stomach cancer patients</li> <li>Their carers</li> <li>Loved ones</li> </ul>
Eyes on the Future
We are a community who care for people affected by Inherited Retinal Dystrophies (IRDs), specifically those affected by RDH12 IRD. We are RDH12 patients, carers, families and friends, united in our drive to find a treatment. What we do We are the catalyst of focused efforts to find a cure for the condition. We deliver tangible progress towards its resolution. We bring together patients, scientists, industries and stakeholders. We accelerate research. Why we exist We want to help people to see for longer. Currently there is a gap between science – which has made a lot of progress into treating similar conditions – and what is available for our condition. We exist to fill this gap and to create awareness that it can be filled.
Help 4 HD International
Help 4 HD International is an international patient advocacy organization focused on Huntington's disease. The website presents a mission, resources, and programs to support HD patients and families. It hosts a diverse range of events each year, including Awareness Days, symposia, walks, Casino Night Out, and Cocktails for a Cure, and provides access to resources via a Resource Database. The site also features The Huntington's Post and Help 4 HD Live, indicating educational and community-facing content and events to inform and engage patients, caregivers, and professionals. Help 4 HD International is a nonprofit organization dedicated to educating the world about Huntington’s disease. It provides resources, support, and advocacy for patients, caregivers, and families affected by HD. The organization offers various programs including resource databases, educational materials, support groups, and advocacy campaigns. It engages in policy work, clinical trial support, and research collaborations. Help 4 HD also produces publications, reports, and educational brochures to raise awareness and provide information about Huntington’s disease. The organization is involved in community outreach, law enforcement awareness, and caregiver support initiatives. It maintains a website with social media presence on YouTube, Facebook, Instagram, and Twitter. It was founded in 2010 and operates internationally, with a focus on education, support, and advocacy.
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.
European Tuberous Sclerosis Complex Association
Established in 2012, ETSC is a federation of Tuberous Sclerosis Associations. ETSC believes in total “patient experience” and that interaction with all healthcare providers and relative agencies is paramount. Objectives • Increase knowledge and awareness on TSC • Promote implementation of European and International diagnostic criteria, surveillance and treatment guidelines • Stimulate research on TSC • Interest European and International organisations in the welfare of those with TSC and their families • Exchange information of mutual interest between associations. Aims • Total patient experience and interaction in each individual country with all healthcare providers and agencies • Uniting TSC Associations to ensure knowledge and surveillance on our rare disorder and orphan drugs are increased • Good working relationships with Pharma and the inclusion of representatives from National Organisations in information and education on Clinical trials and any new drugs being developed for use with our rare disease • Vigilance on protocols and new drugs
Jo’s Cervical Cancer Trust
Jo’s Cervical Cancer Trust went into liquidation in Spring 2024 and has closed. The charity no longer exists and content has been gifted to The Eve Appeal, which now provides current information on cervical cancer, screening and HPV on eveappeal.org.uk. Jo’s Cervical Cancer Trust went into liquidation in Spring 2024 and has closed. The charity no longer exists and all its content, social media and online channels are not in operation. All content from Jo’s original website was gifted to The Eve Appeal and they have incorporated that information which is now available on: https://eveappeal.org.uk/, this is where you will find all current information on cervical cancer, screening and HPV. If you have any questions about screening, test results or HPV and would like to speak to a nurse, please contact The Eve Appeal’s nurse led information service, Ask Eve, on 0808 802 0019 – free to call from landlines and mobile phones – or email nurse@eveappeal.org.uk. You can find The Eve Appeal on: Website: https://eveappeal.org.uk, Instagram: www.instagram.com/eveappeal/, Facebook: www.facebook.com/eveappeal, LinkedIn: www.linkedin.com/company/the-eve-appeal