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>
Glut1 Deficiency UK
Glut1 Deficiency UK is a non-profit family led charity dedicated to improving the lives of those in the Glut1 Deficiency community through its mission of: Increasing awareness of Glut1 Deficiency Improved education of families and health professional in relation to Glut1 Deficiency Advocacy for families and patients impacted by Glut1 Deficiency Support and funding for Glut1 Deficiency research
Stiff Person Syndrome Support and Charity
<p>This site is solely for the support of those suffering from Stiff Person Syndrome (SPS). Family and friends of sufferers are also welcome to the same support. The site may also be of interest to caregivers, care professionals, researchers (together with advocates for the condition) and the general public.</p><p>------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------</p> Stiff Person Syndrome Support Group and Charity, founded in 1998 by Liz Blows, is a UK-based not-for-profit organization dedicated to supporting individuals with Stiff Person Syndrome (SPS). The organization provides information, advocacy, support services, and promotes research into SPS. It aims to raise awareness of SPS, offer patient support, and facilitate research collaborations. The charity operates in the UK and Ireland, with a physical address at 75 Normandy Avenue, Beverley, East Yorkshire, HU17 8PF. It has a charity registration number 1099206. The organization engages in various activities including hosting conferences, supporting patient stories, and maintaining an online presence through social media platforms such as Facebook, Twitter, Instagram, and LinkedIn. The organization also provides educational resources, supports research publications, and collaborates with medical and research institutions. Key personnel include Liz Blows (Chair). The charity is actively involved in policy advocacy, research funding, and community engagement to improve the lives of SPS patients.
IFOPA
To fund research to find a cure for FOP while supporting, connecting and advocating for individuals with FOP and their families, and raising awareness worldwide.
Dravet Foundation
We are committed to carrying out our activity in a TRANSPARENT manner, promoting HONESTY and INTEGRITY in all our actions. We look to the future through INNOVATION, through the development of new avenues of research.
Action Duchenne
Action Duchenne is a patient advocacy group dedicated to supporting individuals and families affected by Duchenne muscular dystrophy (DMD) and Becker muscular dystrophy. The organization provides comprehensive support services, educational resources, and advocacy initiatives. Key activities include running a DMD Registry, offering family support programs (e.g., for mums, dads, grandparents, siblings, and age-specific groups for children and young adults), providing counselling, and addressing end-of-life and bereavement needs. They host an Annual International Conference to empower the Duchenne community through education, foster inclusivity, and drive comprehensive support, bringing together patients, families, clinicians, healthcare professionals, and industry representatives. Action Duchenne also disseminates news on Duchenne research and clinical developments, engages in policy advocacy, and offers educational content on Duchenne science and care.