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
Child Growth Foundation
We are the leading UK charity focusing on the support, understanding and management of rare growth conditions to improve the lives of children, adults and families affected. Our vision is that the UK has a system where all families affected by growth conditions can receive a clinical diagnosis and corresponding care plan, and no-one feels alone or isolated.
Cavernoma Alliance UK
Cavernoma Alliance UK (CAUK) is a charity organization dedicated to supporting individuals affected by cavernoma. It provides patient support services, educational resources, advocacy campaigns, and conducts research. The organization engages in policy advocacy, offers a helpline, support groups, and runs awareness and fundraising activities. It maintains a website with extensive information on cavernoma, including facts, leaflets, and research updates. CAUK collaborates with medical professionals and has an active social media presence. It is a registered charity with the number 1197257, based in Oxfordshire, UK, and operates in multiple countries through its online presence.
International Gaucher Alliance
The IGA is a patient led international organisation that has become the ‘go to’ global voice for over 85% of the Gaucher community and has built its reputation through listening to and delivering outcomes that have impacted on patients and their carers’ lives.
Asociación ALMA
Asociación ALMA is a patient organization formed by patients and family members of patients with leukemia and other blood disorders. It aims to provide emotional and practical support to patients with leukemia and other blood pathologies not supported by other organizations. The organization offers various programs including patient education, emotional containment, legal advice, and emotional support. It seeks to empower patients through educational webinars, patient meetings, and support groups. The organization also advocates for patient rights, collaborates with sponsors and members, and maintains a focus on leukemia and related hematological conditions. It is based in Argentina and operates nationally, with a mission to support and empower blood disorder patients.
PIP UK
There are many children born in the UK and across the world with a rare syndrome called Poland Syndrome. Very little is known about Poland Syndrome and it’s hard to find the right people in the know in the medical community. At PIP-UK we want to change this situation and make sure people get access to the right information for them, at the right time! Our blog has videos on all sorts of things like how to tie shoelaces. There are stories which demonstrate that Poland Syndrome should not hold you back from anything!
Its On The Ball
It's on the Ball is a UK-based registered charity (charity number 1155510) focused on testicular cancer awareness, information, support, and fundraising. The organization provides contact channels for enquiries and support (email info@itsontheball.org and phone 01603 511707) and operates from Norwich, Norfolk, United Kingdom. Core activities include awareness campaigns, patient support resources, fundraising for change, volunteering opportunities, and storytelling/community engagement through its site sections (Testicular Cancer resources, Get Involved, Stories, News). It's On The Ball is a UK-based registered charity (charity number 1155510) focused on testicular cancer awareness, education, and patient support. The organization describes itself as working to raise awareness of testicular cancer and the importance of monthly self-checks, deliver awareness talks to schools, colleges, businesses and organisations around East Anglia, provide patient education resources (leaflets and information), and fundraise to support patients through awareness campaigns, support packs, and grants. Core activities include awareness campaigns (Awareness), patient support (Support), and fundraising initiatives (Fundraising). The site emphasizes patient advocacy through stories, support resources, and community events, including BeerPush fundraising campaigns and other community events. The organization invites donations, volunteers, and corporate support and maintains an active newsletter and events calendar. The content reflects ongoing engagement with the public and communities to improve early detection and patient support related to testicular cancer.