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Experiences with
Primary ciliary dyskinesia (PCD)
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Communities
15 public communities
PCD Family Support Group (UK)
609 members
This volunteer-run group supports patients and families affected by Primary Ciliary Dyskinesia (PCD) in the UK. Any advice given is from a personal perspective. For medical advice please consult your clinicians.
PBCers Organization
1,407 members
PBCers Organization is a community dedicated to providing reliable primary biliary cholangitis (PBC) information and offer support to its members. Topics discussed include symptoms, medication, diet, personal experiences, transplant and anything else PBC related.
PBC Foundation
9,406 members
The PBC Foundation hosts this community to provide support and information to those affected by Primary Biliary Cholangitis - an autoimmune condition that affects the liver. The PBC Foundation is the UK's only, and world's largest, organisation that specifically deals with PBC with registered service users in over 84 countries. We lead the world in PBC in advocacy, support and in providing services such as self-management tools, of which this forum is just one. If you wish to become a registered service user with the PBC Foundation, please visit our website www.pbcfoundation.org.uk and follow the registration process or alternatively please call our office +44 131 556 6811 and we can send out our registration pack free of charge. The current benefits of membership include: ~ free interactive self-management App ~ exclusive content on website, including videos ~ quarterly magazine full of the latest PBC news, including news of upcoming trials, latest research, etc
Blue Faery Liver Cancer
614 members
Blue Faery’s mission is to prevent, treat and cure primary liver cancer, specifically Hepatocellular Carcinoma (HCC), through research, education and advocacy. Our Liver Cancer Community is our online, private forum for HCC patients and caregivers. Blue Faery is a 501(c)(3) national nonprofit organization with offices in Burbank, California and Birmingham, Alabama.
LDN Research Trust
1,387 members
The primary aim of the Trust is to initiate Clinical Trials of Low Dose Naltrexone. Whilst working to raise funds for trials, we have helped over 16,000 people to obtain LDN from a General Practitioner or Neurologist, either through the National Health Service or by private prescription. We have also been able to help people, not just in the UK but in countries throughout Europe, as well as USA, Canada, West Indies, Australia, New Zealand, and others. By using this website and from our downloadable newsletters, you will be able to read the stories of some of these people. We have helped many people with MS, Crohn's, IBS, ME and Cancer to name a few. The use of LDN is spreading. Our ultimate goal is for everyone to be prescribed LDN globally for all conditions where LDN could be of benefit
Pelvic Radiation Disease Association
630 members
The PRDA community is a peer support group where people can ask questions and share their experiences as well as supporting each other in living with Pelvic Radiation Disease (PRD). The group is run by the Pelvic Radiation Disease Association which is a UK based, patient-led charity set up to provide information and support to people who experience PRD following cancer treatment. PRD is a long-term side-effect (‘late effect’) affecting an estimated 100,000 people in the UK. We understand that people living with PRD can often have a complex set of symptoms which may affect their bowel, bladder, sexual and/or other functions for many years after radiotherapy. These symptoms sometimes only appearing several years or even decades after their radiotherapy treatment. PRD is defined as one or more ongoing symptoms of variable complexity that may affect people who have previously had radiotherapy to the pelvic region to treat their cancer. This includes pelvic radiotherapy for cancers of the colon, rectum, anus, prostate, testes, bladder, cervix and womb, but also total body radiotherapy and radiotherapy in the pelvic area for other primary and secondary cancers. Other words that are sometimes used to describe symptoms of PRD include: Radiation enteritis, Radiation proctitis, Radiation colitis, Radiation enteropathy, Radiation cystitis, Radiation cystopathy, Radiation-induced lumbar plexopathy and Pelvic insufficiency fractures.
Cure Parkinson's
25,711 members
This Cure Parkinson's HealthUnlocked community aims to seek the opinions of those with Parkinson's to help shape research and best clinical practice. Cure Parkinson's has one bold aim: to cure Parkinson's disease. We fund innovative projects and inspirational scientists with the aim of building momentum towards a cure. We improve communication and promote collaboration between researchers. We were founded by patients and involve patients in our work. We are working with the European Parkinson's Disease Association (EPDA) within HealthUnlocked to support members with topical information.
LIVErNORTH
418 members
We are a adult liver patient support group based at the Freeman Hospital in Newcastle upon Tyne, England. Whatever kind of liver disease you may have, we are here to support you. Whilst we will endeavour to assist you with any queries relating to liver disease it would be inappropraite for us to comment on liver function blood test as there are too many variables involved to generalise. Your hepatologist is the appropriate person to ask for advice in this instance.
Liver4Life
1,958 members
Liver4Life is run by a few individuals passionate about liver health. We all have extensive backgrounds of working in the health and charity sector and most importantly in the liver community. The team are all working on a purely voluntary basis, while we undertake some fundraising to get the key services together. L4L is a new and modern charity dedicated to supporting any person affected by a liver condition in the UK. • L4L offers support, education and campaigns on behalf of people with a liver condition to improve their care, their treatment and their support services. • L4L recognises the importance of preventing liver disease and the early detection of a liver condition, liver disease and liver cancer in the UK. • Our absolute priority is supporting liver patients in the UK
British Liver Trust
36,874 members
The British Liver Trust helps everyone affected by any liver condition, providing support, information and guidance, and lobbying for improved services across the country. Liver Disease is the only cause of death on the increase and affects an estimated 20% of the population. Only by increasing awareness of the risks, campaigning and funding research will we reduce the impact of liver disease in the future.
The Simon Foundation for Continence
636 members
Welcome to The Simon Foundation for Continence online support community. The Foundation is dedicated to providing educational information, resources, and support to people with incontinence and their caregivers, both professional and family/friends. We provide educational support to both urinary and/or bowel incontinence issues. Established in 1982 in the US, we have been continually dedicated to: Bringing the topic of incontinence out into the open, removing the stigma surrounding incontinence, and providing help and hope for people with incontinence, their families, and the health professionals who provide their care. While we are based in the US, we work internationally. And you can learn more about us and our history on our main website: https://www.simonfoundation.org/
Bladder Health UK
1,168 members
The Bladder Health UK Foundation gives support to people with all forms of cystitis, overactive bladder and continence issues together with their families and friends. We are the largest bladder patient support charity in the UK. We have the busiest message board forums in Europe and the most widely used website for those bladder illness sufferers seeking information, help and support.
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