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41 public communities
MyDirectives: Make your medical wishes known!
65 members
MyDirectives is the first completely digital emergency, critical and advance care planning service that is secure, easy to understand, and free to consumers to use. Apple iPhone users can also download MyDirectives MOBILE for free in the Apple App Store. MyDirectives and MyDirectives MOBILE are services offered by ADVault, Inc., a privately owned U.S. corporation dedicated to ensuring that emergency first responders, doctors, nurses and caregivers always have access to the most important voice in healthcare - yours. MyDirectives helps consumers record their medical treatment wishes, preferences regarding palliative and hospice care, organ donation, and autopsy, and other critical personal information both on the device, and in the format, that is most convenient and comfortable for them. We then work with healthcare providers and payers, to make the directives available.
Fight Bladder Cancer
1,194 members
Fight Bladder Cancer is a national charity supporting those with bladder cancer, campaigning to raise awareness and supporting medical research.
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.
HealthWeb Navigator
225 members
The goal of this community is to help patients to find the best resources about the health care. At HealthWeb Navigator, we evaluate healthcare websites, allowing users to see which resources provide consumer-friendly and up-to-date information. Health care has become complicated. Many patients are spending more of their own money to cover medical costs and less time receiving the care they need. Consumers are turning to the internet for diagnosis and learning more about health conditions. Major challenges include understanding medical costs and conditions, finding the right doctor or hospital, and accessing the latest research.
Gorlin Syndrome Group
221 members
The Gorlin Syndrome Group is a support network offering guidance and information to individuals, their families and carers whose lives are affected by Gorlin Syndrome (also known as Nevoid Basal Cell Carcinoma Syndrome). The group is organised by individuals affected by Gorlin Syndrome and their families, with support from medical advisors. Our aims and objectives are: to offer guidance and information to individuals, their carers, family and friends with Gorlin syndrome the advancement of the education of the medical profession into Gorlin syndrome and its implications for the family to promote research into the causes, effects, treatment and management of Gorlin syndrome.
Sweet's Syndrome UK
473 members
Sweet's Syndrome UK is a Derbyshire-based (formerly Cardiff-based) patient group that helps those with the rare autoinflammatory condition and neutrophilic dermatosis, Sweet's syndrome. Information provided is evidence-based and supported by medical research.
Lymphoma Canada
763 members
Lymphoma affects many people, from patients, family and caregivers, to medical professionals and researchers. Lymphoma Canada connects and empowers this community. Together we are promoting early detection, finding new and better treatments, helping patients access those treatments, learning lymphoma's causes and finding a cure.
Behçet's UK
5,244 members
Behçet’s UK cares for all those affected by Behçet’s including diagnosed patients, those not yet diagnosed, those that think they may have Behçet's, and their carers. We promote research into the condition and our ultimate aim is to find a cure but in the meantime, we will strive to obtain the best care for all Behçet’s patients. Our Behçet's UK Medical Factsheets (https://behcetsuk.org/behcets-medical-factsheets) are written by lead Behçet’s clinicians. Behçet’s UK: How we help - We were instrumental in establishing Specialist Centres for Behçet’s in NHS England and we now lobby for equivalent care in Wales, Scotland, and Northern Ireland. - Hold an Annual General Meeting and Conference. Allowing those affected by Behçet’s to hear from Behçet’s specialists and patients, ask questions, and meet others with this rare condition. - Publish a quarterly newsletter keeping our members up to date with the Society’s activities including lobbying on rare diseases along with our work with researchers. - Maintain an active Medical Advisory Panel with eminent representatives from each of the medical disciplines involved in Behçet’s to whom questions can be directed. - Manage a website that includes factsheets written by lead Behçet’s clinicians on each of the areas affected by Behçet’s. - Provide a Helpline run by volunteers who have an understanding of Behçet’s. - Facilitate peer-to-peer support groups to minimise the isolation experienced by patients. - Award small personal grants for items that will help members manage their Behçet’s day-to-day. - Host an annual event for members to have fun with their friends, family, and carers and get to know others affected by Behçet’s Become a member Join here: https://behcetsuk.org/how-to-join/
Kidney Cancer Cure
100 members
The Kidney Cancer Research Alliance (KCCure) is a grassroots organization of patients, caregivers, doctors and medical researchers dedicated to eliminating suffering and death due to kidney cancer through increased funding to accelerate research that will lead to a cure for all patients and prevent future kidney cancer diagnoses.
STARS
1,269 members
STARS, or Syncope Trust And Reflex anoxic Seizures aims to ensure that anyone presenting with unexplained loss of consciousness receives the correct diagnosis, the appropriate treatment, informed support and sign posting to the appropriate medical professional. STARS offers information and advice to help manage symptoms and regain quality of life through our helpline and medically approved resources.
Vasculitis UK
7,776 members
Vasculitis UK is the UK's number one Vasculitis charity, run by people with Vasculitis for people with Vasculitis. We promote a national network of support groups, have a website, social media resources and a near 24 hour helpline that all help the trust to achieve its aims; offering support to sufferers, their families and friends both at home and abroad by providing information, advice and the means to contact each other. We work with other organisations and medical professionals to improve the recognition, diagnosis and treatment of Vasculitis. We raise awareness of Vasculitis among medical professions and the general population. We encourage and support the formation and development of local independant Vasculitis support groups. We raise funds in order to support research into the causes and effects of vasculitis, into improvements in the diagnosis of vasculitis and into the treatment of people suffering from all the different types of vasculitis.
SHARE Breast Cancer Support
2,375 members
SHARE Breast Cancer Support is a space where you can feel safe, supported, and empowered to tell your story and discuss your issues. SHARE peer volunteers, as well as other women just like you, are here to answer your questions and provide encouragement. Please visit our website to learn more: www.sharecancersupport.org. Many of our community members have questions about experience with specific breast cancer treatments like Tamoxifen, Xeloda, Letrozole, Fulvestrant, etc. You can type the name of the treatment you're looking for into the post search box to find all posts that reference these treatments. There is a lot of good information here from other patients, survivors, and caregivers on topics like DCIS, mastectomy/double mastectomy surgery, inflammatory breast cancer, taxol, breast lumps, breast cancer stages, and more. If you don't find what you're looking for, feel free to message an admin who will get back to you. As a community we have rules. Inappropriate, abusive, or irrelevant posts, advertisements, and sexual photographs will be removed, as will disrespectful or offensive comments on threads. Please respect the diversity of political, spiritual and nonspiritual beliefs of our users, and please note, we DO NOT permit messaging with a bias against any group of people. Any content on this site is NOT to be construed as medical advice! Members should always consult their doctors regarding a medical condition or treatment. Organizations must post events and services as individual users and must avoid direct advertising. The views presented on this site do not represent the views of SHARE. This community is monitored Mon-Fri, 9:30 am - 5:30 pm ET. Any content reported outside of this timeframe may not be reviewed until the following business day.
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