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
Multiple Sclerosis Society (MS Society UK)
Multiple sclerosis (MS) is a neurological condition - that means it affects your nerves. You get it when your immune system isn’t working properly. Your immune system normally protects you by fighting off infection, but in MS it attacks your nerves by mistake. Your nerves control lots of different parts of your body. That’s why you can get MS symptoms in many parts of your body. It’s also why everyone’s MS is different. Once diagnosed, MS stays with you for life, but treatments and specialists can help you to manage the condition and its symptoms. We're here to help you live well with your MS and fund research to stop MS for good.
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.
Pitt Hopkins UK
In September 2013 the members of the Pitt Hopkins UK fundraising group knew of 33 cases of PTHS in the UK. In September 2014 we were in contact with at least 40. At our PTHS UK Day in July ’14, we heard that there were about 200 diagnosed people in the UK. This meant we had contact with about 1 in 5 of all cases already diagnosed in the UK. In June 2015 we had contact with over 60 families. Some of these new families came from the DDD study. In 2020 we have contact with about 100 families in the UK and Ireland and it is estimated there are 300 families diagnosed in the UK. We know there are many more families out there both diagnosed and undiagnosed. We hope to find them. If you are one of them please contact us.
MPN Voice
MPN Voice is a registered charity focused on supporting individuals with myeloproliferative neoplasms (MPNs). Their activities include providing information, raising awareness, supporting patients through various programs, conducting research, and advocating for the MPN community. They offer educational resources, patient support services, and organize events and forums. They also engage in clinical research and trials, provide patient stories and testimonials, and maintain a strong online presence through their website and social media channels. As a charity, they are under the auspices of Guy's and St Thomas' Foundation, with registered charity number 1160316. MPN Voice is a registered charity under the auspices of Guy's and St Thomas' Foundation. It supports patients with myeloproliferative neoplasms (MPNs) through advocacy, education, support groups, research, and awareness campaigns. The organization provides patient education resources, hosts forums and events, and collaborates with healthcare professionals and research institutions. MPN Voice also engages in policy advocacy, clinical trial support, and fundraising activities to improve patient outcomes and quality of life. It maintains a website with extensive information on MPNs, treatments, and living with the condition, and actively promotes community engagement and patient empowerment.
Heartburn Cancer UK
Heartburn Cancer UK is a charity dedicated to raising awareness, supporting patients, and promoting early diagnosis of oesophageal and stomach cancers. They provide educational resources, support groups, patient stories, and advocacy activities. The organization aims to improve cancer survival rates through community engagement, professional collaboration, and research involvement. They operate in the UK and have a focus on conditions such as persistent heartburn, Barrett’s oesophagus, and oesophageal cancer. The charity also offers support services, educational programs, and participates in policy and regulatory engagement to influence healthcare practices.
Pancreas Hope
Mobilise patients, families and friends to collect and share their testimonies, make themselves heard and understood. Inform members of ESPOIR PANCREAS and the general public about advances in treatment Raise public awareness of pancreatic cancer Represent patients on ad hoc committees