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Experiences with
Mantle cell lymphoma (MCL)
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Communities
20 public communities
Lymphoma Canada
766 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
2,004 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.
The UK Mastocytosis Support Group
573 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.
Non Hodgkin's Lymphoma Friends
1,785 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
Small Cell Lung Cancer Support
113 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
PMRGCAuk
20,737 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
5,569 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
CLL Support
22,844 members
Chronic Lymphocytic Leukaemia Support https://www.cllsupport.org.uk is a patient-led charity founded in the UK in 2004. 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
220 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.
Care Community
5,889 members
The Care Community is a place for all carers to discuss health and caring for loved ones, particularly in later life. Talking about the challenges you face as a carer for an older person can be hard, but sometimes, there’s nothing more helpful than talking with others who are in the same boat. Our community is one where we can all have the conversations we need to, sharing our experiences and supporting each other.
SHARE Ovarian Cancer Support
2,778 members
SHARE Ovarian Cancer Support is a space where you can feel safe, supported, and empowered to tell your story and discuss your issues. SHARE peer volunteers, as well as other women just like you, are here to answer your questions and provide encouragement. Please visit our website to learn more: www.sharecancersupport.org. Whether you're a long-term survivor looking to inspire others or are here to ask about CA-125 levels rising, you are very welcome here. Many of our community members have questions about experience with specific ovarian cancer treatments like rubraca, Lynparza, Zejula, etc, as well as broader questions including ovarian cancer signs symptoms, ovarian cysts, early signs of ovarian cancer, and more. You can type the name of the treatment you're looking for into the post search box to find all posts that reference these treatments. You can also search for various histopathologies of ovarian cancer, like clear cell carcinoma or mucinous ovarian cancer. As a community we have rules. Inappropriate, abusive, or irrelevant posts, advertisements, and sexual photographs will removed, as will disrespectful or offensive comments on threads. Please respect the diversity of political, spiritual and nonspiritual beliefs of our users, and please note, we DO NOT permit messaging with a bias against any group of people. Any content on this site NOT to be construed as medical advice! Members should always consult their doctors regarding a medical condition or treatment. Organizations must post events and services as individual users and avoid direct advertising. The views presented on this site do not represent the views of SHARE. This community is monitored Mon-Fri, 9:30 am - 5:30 pm ET. Any content reported outside of this timeframe may not be reviewed until the following business day.
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