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Experiences with
Gaucher disease type 1 (GD1)
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Communities
84 public communities
AMN EASIER
1,313 members
AMN Easier was set up to help men and women who have adrenomyeloneuropathy (AMN) - to help make this disease a bit easier to live with. AMN EASIER provides information and support by (1) providing answers to health questions from other AMN patients with experience of the disease; (2) showing what other AMN patients are doing and thinking; (3) describing ideas and possibilities for therapies that could help
dRTA (distal Renal Tubular Acidosis)
446 members
dRTA (distal Renal Tubular Acidosis) is a rare type of kidney disease that can have a have major impact on a person’s health throughout their life. National Kidney Foundation has created this community to provide a source of support and general information and to help raise awareness and understanding about dRTA for patients and their families. Fueled by passion and urgency, NKF is a lifeline for all people affected by kidney disease. As pioneers of scientific research and innovation, NKF focuses on the whole patient through the lens of kidney health. Relentless in our work, we enhance lives through action, education and accelerating change.
Kidney Disease
11,182 members
Welcome to the National Kidney Foundation's Community for people affected by Chronic Kidney Disease (CKD)! In this community you will find a safe and supportive space where you can share your experiences, ask questions, and get answers that are accurate and up to date. Fueled by passion and urgency, NKF is a lifeline for all people affected by kidney disease. As pioneers of scientific research and innovation, NKF focuses on the whole patient through the lens of kidney health. Relentless in our work, we enhance lives through action, education and accelerating change.
FieryBones - RA Community
674 members
Rheumatoid Arthritis, or RA, is a type of auto-immune disease where the body's immune system starts attacking its own tissues and joints. It can happen at any age and is one of the most common form of arthritis. Some of the common symptoms are painful and swollen joints, fatigue and weakness. For people living with RA, it is a daily struggle to balance their personal and professional lives with the unpredictability of this painful disease. FieryBones has been created to connect all the RA warriors and caregivers throughout the world on a single platform. Nothing makes us feel better than reading inspirational blogs of how our RA peers are coping with this illness and sharing our story with the community that truly understands!
ABDA
551 members
American Behcet's Disease Association - we aim to support patients with Behcet's disease and their families.
Acid Reflux Support
1,567 members
For more than three decades, the OPA has fought against oesophageal and gastric cancers, raising awareness, supporting patients, caregivers and their families. Whether you are in the early stages or further along in your journey, the OPA is dedicated to offering support and guidance. Did you know? There are over 65 Million people in the UK and it is estimated that over 1 in 10 people suffer from Reflux Disease. Reflux disease can have a terrible impact on a patients quality of life affecting many aspects of their everyday functioning. For many people, this can be managed effectively with lifestyle changes and/or medication prescribed by their GP such as omeprazole, lansoprazole and esomeprazole (as well as others). However there are over 2 million people in the UK who do not respond effectively to this treatment and for these people, there are other options they can consider to treat their disease. Head to our website for more information - https://opa.org.uk/
Children's Liver Disease Foundation
2,003 members
CLDF is a UK based national charity taking action against the effects of childhood liver disease, providing information, emotional support, research funds and a voice for all affected.
Guy Francis Bone Cancer Research Fund
94 members
Bone Cancer is Britain’s Number 1 Teenage Cancer. Guy’s Fund raises money for vital research, promotes awareness and campaigns for patients’ rights. Alarmingly, Bone Cancer is Britain’s Number 1 Teenage Cancer. The Guy Francis Bone Cancer Research Fund raises money for vital research, promotes awareness and education, advocates a “Patient Voice” and also campaigns for patients’ rights including important welfare reform for young people undergoing long term treatment programmes which may result in permanent physical disability.
Living with Lyme Disease UK
233 members
Welcome to LWLD community! :) Here you can share your experiences about living with Lyme Disease in a non-judgemental friendly environment. The philosophy of the group to treat one another with respect & understanding focusing on bringing the Lyme community together to support each other. We aim to post relevant information or signpost members to other organisations that may give the appropriate advice. We are passionate about raising awareness & share relevant campaigns to help spread the word. Please can we kindly ask you adhere to the guidelines to make the community a supportive place for one & all. Any questions pleases contact our Volunteer Admin or alternatively email lwlymedisease@gmail.com. IMPORTANT: Living with Lyme Disease UK is NOT associated with any UK charities for Lyme disease and are an independent group for those living with Lyme Disease.
Paget’s Support
299 members
This is a safe online community for anyone affected by Paget's disease to share advice, find support and meet others who truly understand. Whether you're newly diagnosed, been living with Paget's disease for years or caring for someone affected, this is the community for you. Why not introduce yourself today: https://healthunlocked.com/pagets-support
Hidradenitis Suppurativa Support
662 members
The Hidradenitis Suppurativa Trust is a UK Registered Charity dedicated to the raising of awareness, understanding and support for the chronic, debilitating skin disorder Hidradenitis Suppurativa (HS). Hidradenitis Suppurativa is estimated to affect only 1% of the UK population, however these figures could in effect be higher due to mis-diagnosis, and those who suffer alone in silence, as the disease dominates the most intimate areas of the sufferer, thus leaving some people too ashamed or embarrassed to go to their doctor. Our aim is to increase public knowledge and educate the medical profession on the symptoms, treatments and severities of Hidradenitis Suppurativa, and to provide vital funds for the purpose of research into causes, prevention and treatment.
Kidney Health New Zealand
427 members
We support patients and their families living in New Zealand who have been impacted by kidney disease.
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