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Experiences with
Stem cell and bone marrow transplants
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Communities
30 public communities
Kidney Transplant
3,534 members
Welcome to the National Kidney Foundation's Transplant Community! Whether you have had a transplant, are waiting for a transplant, or are a family/friend/caregiver, here 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.
Sickle Cell Society
2,000 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.
Living with Sickle Cell Disease
492 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.
National Foundation for Transplants
300 members
At the National Foundation for Transplants, our goal is to ensure that transplant patients are given every opportunity to fully enjoy the gift of life. Since 1983, NFT has offered fundraising support and expertise to transplant patients across the country. In that time, we have helped generate nearly $65 million to assist patients in need.
The UK Mastocytosis Support Group
543 members
The UK Mastocytosis Support Group community is for anyone with diagnosed or un-diagnosed Mast Cell Diseases or those supporting them. The UK Mastocytosis Support Group is a charity that supports people with Mast Cell Diseases including Mastocytosis and mast cell activation syndromes. We support people by informing them of various aspects of Mast Cell Diseases and testing.
Kidney Transplant Patient Support
1,317 members
Welcome to our community! We are a group of people all affected by kidney transplants looking to share information and support.
Small Cell Lung Cancer Support
102 members
The Small Cell Lung Cancer Support Community is a peer support network run by the GO2 for Lung Cancer: https://go2foundation.org/, the place where people impacted by small cell lung cancer can connect, learn, and find hope and support. We are focused on understanding and meeting the needs of the small cell lung cancer community from diagnosis through treatment and on to survivorship. Your needs are important – Click HERE: https://www.surveymonkey.com/r/QDFNG7R to take the Small Cell Lung Cancer Survey: Understanding Your Needs To learn more about Small Cell Lung Cancer, Click HERE: https://go2foundation.org/what-is-lung-cancer/types-of-lung-cancer/small-cell-lung-cancer/ and explore the GO2 Small Cell Lung cancer education materials, videos, and more. Through our Small Cell Lung Cancer Initiative, we have dedicated and knowledgeable staff to answer questions and provide resources to you whether you are a patient, caregiver, or loved one. If you would like personalized support, treatment information, clinical trial assistance, or if you just have questions, please call our helpline at 800-298-2436, email at support@go2.org
PBCers Organization
1,397 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.
PMRGCAuk
20,305 members
Polymyalgia Rheumatica and Giant Cell Arteritis UK (PMRGCAuk) is a UK-wide charity set up to provide information and support, raise awareness, and foster research into PMR and GCA. On this forum you can share your own experiences of dealing with these little-known and frightening conditions with others who know what you are talking about; and also gain ideas about ways to take care of yourself and help yourself on the road to recovery. Do discuss ideas you find on the forum with your doctor, especially if you are considering changing your level of medication Our website is http://www.pmrgca.org.uk.
Foggy's "Invisible Illness" Support
5,535 members
With charitable donations, we are able to provide 2 Hydrotherapy sessions per week, for our paid members. We are dedicated to providing support, raising awareness and promoting positivity, for invisible conditions primarily for: Arthritic Condition's Chronic Fatigue Syndrome Chronic Widespread Pain Fibromyalgia Giant Cell Arteritis Long Covid M. E. Myalgic Encephalopathy Myofascial Pain Polymyalgia Rheumatic Condition's
Nutrition and Yoga for Health
1,351 members
Holistic health pioneer, yoga teacher and author, Ciara Jean Robert brings you this community. Her wish is to share with you helpful tools on your own unique journey. With a previous background in credit risk, banking, Ciara understands the stresses that can partner corporate life, She successfully transitioned 10 years ago to running her own business, Wholly Aligned. That transition was prompted by her precious first kidney transplant beginning to move through a rejection process and eventual failure. Using nutrition, yoga and inspiring story she has gathered through her own lived experience with her kidneys, she wishes to help you awaken your inner physician. Dwell in all possibilities. Ciara received the gift of a second kidney transplant in October 2019. And is currently embarked inward writing Book 2. Weaving in the incredible experiences of healing and integration, from the impact our words carry, to the influence the quality of breath has on how we feel, to hw a deeply embodied sense of being, is truly what opens up one's mind to the magic of life. Being alive. In sacred recalibration. She is a qualified Naturopathic Nutritional Therapist, a highly experienced yoga professional and writer. And also a big hearted human with an absolute love of life. Live your life each and every day. Dream big, live hopefully. Sign up to her mailing list and learn more on her website in the contact detail section.
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.
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