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Experiences with
Simple renal cyst
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Communities
6 public communities
dRTA (distal Renal Tubular Acidosis)
478 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.
Acoustic Neuroma Support
2,729 members
Welcome to The Brain Tumour Charity Acoustic Neuroma peer support online community for those affected by Acoustic Neuroma (Vestibular Schwannoma), a rare but invariably benign brain tumour. You can ask questions, get support from others and share your experiences, at any time of the day or night- you can be totally open. Or you can simple read people’s stories, knowing there are others right there with you. As a charity, we will share useful resources, information and charity news The Brain Tumour Charity is the world’s leading brain tumour charity and the largest dedicated funder of research into brain tumours globally. Committed to saving and improving lives, we’re moving further, faster to help every single person affected by a brain tumour. We’re set on finding new treatments, offering the highest level of support and driving urgent change. And we’re doing it right now. Because we understand that when you, or someone you love, is diagnosed with a brain tumour – a cure really can’t wait. If there is anything you would like to talk about with our Support team, please contact us at support@thebraintumourcharity.org, or call our Information and Support Line on 0808 800 0004.
Heart Valve Voice
413 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.
Living with Sickle Cell Disease
494 members
Living with Sickle Cell Disease is a community dedicated to supporting individuals affected by sickle cell disease; whether you've been diagnosed with sickle cell disease, living with sickle cell trait or supporting a loved one. In this peer community, you can discuss, share stories, and receive support from others dealing with these conditions.
Sickle Cell Society
2,008 members
The Sickle Cell Society is Britain’s only national charity for sickle cell disorders, an inherited haemoglobin disorder. The Sickle Cell Society was founded in 1979 by a group of patients, parents and health professionals who shared concerns about the lack of understanding of sickle cell disorders and the inadequacies of treatment. We aim to raise awareness of sickle cell disorders, push for improvements to treatment and provide advice, information and support to the sickle cell community. This community connects people living with or affected by sickle cell in the UK.
Kidney Dialysis
2,743 members
Welcome to the National Kidney Foundation Dialysis! 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.