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Experiences with
Aortic valve disease
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70 public communities
Heart Valve Voice
415 members
Heart Valve Voice is the UK's dedicated heart valve disease charity. Heart Valve Voice is a collection of people with real experiences of heart valve disease, including a multi-disciplinary group of experts in the field (cardiologists, cardiac surgeons, GPs), cardiac patient societies and, most importantly, patients. We work with patients and clinicians to help increase the awareness of heart valve disease in the UK and improve diagnosis and treatment. Heart valve disease affects over 1.5 million people over the age of 65 in the UK and while there have been many advancements in the treatment of this disease the unfortunate fact is that far too many people are not being diagnosed and treated early enough. As a patient organisation, the power of our voice comes from the lived experiences of our patient community. Their stories are our lifeblood, and we use those experiences to affect change for future valve disease patients. Our community is a place where people can share their experiences, support each other and learn about heart valve disease treatment. You can read some of our heart valve disease stories here <https://heartvalvevoice.com/heart-valve-disease/stories> Our aim is to ensure that more of the population is aware of the importance of having their heart checked for heart valve disease, which can often be detected through a simple stethoscope check. With increased awareness, we hope to see many more heart valve disease patients get the treatment they need to go on to live full and happy lives.
Anticoagulation Support
3,849 members
The Anticoagulation Support community is for anyone impacted by a health condition such as atrial fibrillation, stroke, deep vein thrombosis (DVT) and pulmonary embolism (PE), aortic heart valve replacement, antiphospholipid syndrome and thrombotic disorders. These conditions can increase the risk of blood clots or thrombosis and may require anticoagulation therapy to treat or prevent blood clots from happening. Anticoagulant therapy is sometimes described as a blood thinner and can be given for a short period of time (to prevent clots after hip and knee replacement surgery) or long term for people with thrombotic disorders to prevent recurrence of clotting episodes. Some people may be offered anticoagulation medication when they are being treated for cancer. Anyone requiring anticoagulation therapy should discuss medication options with a health care provider and be given adequate information around the duration and monitoring of the treatment provided. In the UK, there are several oral anticoagulant medications available - Apixaban, Dabigatran, Edoxaban, Rivaroxaban and Warfarin. Heparin is given by injection. Anticoagulation Support aims to help individuals engage with people who have lived experience of living with a condition and being treated with anticoagulants. The site is moderated by HealthUnlocked with input from an anticoagulation patient expert and an anticoagulation healthcare professional. For information about anticoagulation therapy and related conditions visit.... NHS website - https://www.nhs.uk/ National Institute of Health and Care Excellence(NICE) - https://www.nice.org.uk
Kidney Disease
12,107 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.
ABDA
553 members
American Behcet's Disease Association - we aim to support patients with Behcet's disease and their families.
Children's Liver Disease Foundation
2,033 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.
Living with Lyme Disease UK
244 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
303 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
Kidney Health New Zealand
429 members
We support patients and their families living in New Zealand who have been impacted by kidney disease.
Partners for Behcet's
528 members
We are a community dedicated to supporting those with Behcet’s Syndrome, which is a rare disease that sees the blood vessels become inflamed.
Crohn's and Colitis Support
5,430 members
We are a peer support community for people living with Crohn's disease and Ulcerative colitis. Here we share our experiences, ask questions and support each other!
Parents of Children with Kidney Disease
987 members
Welcome to the National Kidney Foundation's Community for Parents of Children with Kidney Disease! 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.
Graves Disease Support
1,853 members
We are a peer support community for people living with Graves Disease. Here we share our experiences, ask questions and support each other!
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