Search
Search
About
Log in
Join
Experiences with
Cutaneous T cell lymphoma (CTCL)
Posts
Communities
23 public communities
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.
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.
The UK Mastocytosis Support Group
549 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.
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.
Achalasia Action
146 members
Welcome to the Achalasia Action (ACAC) community, which has been set up to help people living with achalasia and spasms in the oesophagus. Achalasia is a condition affecting motility and the ability of swallowed food to reach the stomach because of issues affecting peristalsis, the muscular process that propels food into the stomach. Our charity Achalasia Action is registered with the Charity Commission for England & Wales (no 1187367) and runs a website www.achalasia-action.org and a helpline 0300 772 7795. We organise patient support meetings two or three times a year, either online or, subject to COVID19 restrictions, at the Hospital of St John and St Elizabeth, 60 Grove End Road, St John’s Wood, London NW8 9NH. ‘Achalasia Explained’ can be downloaded from the ACAC website www.achalasia-action.org/information-hub.html We also produce a set of YouTube videos: Understanding Achalasia (the first we published) https://www.youtube.com/watch?v=LHWFGdKINpE&t=181s Diagnosing Achalasia https://www.youtube.com/watch?v=zRjzFzwJgnQ&t=378s Treatments: https://www.youtube.com/watch?v=JXLJE4ezKfY&t=361s ACAC Charity https://www.youtube.com/watch?v=A8jvPJZ3qwk&t=148s
Small Cell Lung Cancer Support
103 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
Non Hodgkin's Lymphoma Friends
1,773 members
Patient Empowerment Network (PEN) is honored to offer a peer-support community for those living with Non-Hodgkin's Lymphoma, their families and their loved ones. Connect with patients like you and share your experiences. Discuss treatment, recovery, diagnoses, and help other patients through their journey. PEN is a nonprofit (501(c)(3) Public Charity) based in the US that works to help you gain confidence and strength to get yourself the best care and most personalized treatment. We are here to help you stand up and advocate for yourself and become informed so that you can make the right decisions for you. Giving medical advice or promoting alternative treatment that is not proven by clinical trials and approved by regulatory agencies is prohibited. Your participation should be respectful, honest and in the spirit of supporting and learning from others
PMRGCAuk
20,342 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
5,539 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
LUPUS UK
31,744 members
This HealthUnlocked Community is a peer support forum facilitated by LUPUS UK - The national registered charity for people affected by lupus and assisting those approaching diagnosis. This community is available for anybody affected by lupus to get information, support and advice from other people who are similarly affected. We welcome people with any form of lupus (SLE, discoid lupus, drug-induced lupus, cutaneous lupus etc.) as well as those with associated conditions such as mixed connective tissue disease (MCTD) and undifferentiated connective tissue disease (UCTD). The community discusses a wide range of topics including; diagnosis, symptoms, medical appointments, medications and support available. LUPUS UK provides a wide range of publications about lupus which are free to read and download on our website HERE: https://www.lupusuk.org.uk/publications/ Please consider paying £10 a year to become a member of LUPUS UK. You will receive our magazine three times a year and our charity to support others, fund medical research and Specialist Lupus Nurses. JOIN HERE: https://www.lupusuk.org.uk/shop/#!/Memberships/c/14192101/offset=0&sort=normal
CLL Support
22,532 members
Chronic Lymphocytic Leukaemia Support https://www.cllsupport.org.uk is a patient-led charity founded in the UK in 2003. We support patients with Chronic Lymphocytic Leukaemia (CLL) and Small Lymphocytic Lymphoma (SLL) and their families/carers. CLL Support encourages education whilst working for access to treatments that will improve CLL outcomes. We provide information about developments in CLL/SLL treatment and research along with opportunities for awareness raising and mutual support, including the opportunity to meet at UK conferences several times each year. CLL Support at HealthUnlocked brings together a supportive international online community to allow those living with CLL/SLL and their family/carers to share their experiences. The group is supported by Admins, Volunteers and international information, resources and perspectives. Please take the time to read our [b]Community Guidelines[/b] where you’ll also find privacy and online safety tips and community contact information: https://healthunlocked.com/cllsupport/posts/148645878/hu-cll-support-community-guidelines-along-with-further-recommendations-to-keep-you-and-our-community-safe When you post, choose carefully whether you want your post to be read only by our community or searchable and readable by anyone on the internet (which is how you probably found us). See the previous link for more details. Next, our [b]welcome post[/b] is a good place to start: https://healthunlocked.com/cllsupport/posts/141151813/newly-diagnosed-with-cll-or-just-found-us-this-post-is-for-you Our other [b]Pinned Posts[/b] answer Frequently Asked Questions: https://healthunlocked.com/cllsupport/posts#pinned Finally, [b]please update your profile[/b], including where you live, to help us better help you: https://healthunlocked.com/profile/edit Thank you
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.
1
2
Next page