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Experiences with
Small lymphocytic lymphoma (SLL)
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Communities
9 public communities
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
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.
CLL America Support
1,579 members
Welcome to our community! This is a safe space for anyone affected by chronic lymphocytic leukemia (CLL) to find support, share advice and meet others who truly understand. Why not introduce yourself today: https://healthunlocked.com/cll-america-support/write
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
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
Alopecia UK
1,497 members
Alopecia UK is a small national charity working to improve the lives of those affected by alopecia through aims of support, awareness, research and fundraising. Despite being a small charity we are still the largest alopecia charity in the UK with big ambitions to develop and grow further. Alopecia UK was founded in 2004 and registered with the Charity Commission of England & Wales in September 2005. Registration with the Scottish Charity Regulator took place in February 2014. We also have a website full of information and support - https://www.alopecia.org.uk/ As well as a very active closed Facebook group - https://www.facebook.com/groups/AlopeciaUK/ Our HealthUnlocked forum is still fairly quiet, as such if you ever find your post goes unanswered or you'd like some further help please consider joining the Facebook group or contacting the charity directly.
Multiple System Atrophy Trust
1,693 members
The Multiple System Atrophy Trust is the only charity in the UK and Ireland that provides information and support to people affected by Multiple System Atrophy (MSA). We do this through a number of ways including our three MSA Nurse Specialists, a network of Support Groups, information resources and our MSA News magazine. We also provide funding towards research projects and small grants to our members. We are entirely funded by voluntary donations. Share your stories, ask questions and support one another!
DC Action
28 members
We are a peer support group for people and families affected by telomeropathies and dyskeratosis congenita (DC). DC Action aims to improve diagnosis, treatment and health services. DC is rare but other telomeropathies may be more common and can be confused with other conditions. Specialist care is essential but can be difficult to find. Please share your experiences. We are a small group so it's really important that our voices are heard to help improve access to specialist care and treatment. Post about diagnosis, treatment, access to health services, share problems, ask questions and offer solutions. Polls and questionnaires will help us to lobby for better NHS services.
Behçet's UK
5,305 members
Behçet’s UK cares for all those affected by Behçet’s including diagnosed patients, those not yet diagnosed, those that think they may have Behçet's, and their carers. We promote research into the condition and our ultimate aim is to find a cure but in the meantime, we will strive to obtain the best care for all Behçet’s patients. Our Behçet's UK Medical Factsheets (https://behcetsuk.org/behcets-medical-factsheets) are written by lead Behçet’s clinicians. Behçet’s UK: How we help - We were instrumental in establishing Specialist Centres for Behçet’s in NHS England and we now lobby for equivalent care in Wales, Scotland, and Northern Ireland. - Hold an Annual General Meeting and Conference. Allowing those affected by Behçet’s to hear from Behçet’s specialists and patients, ask questions, and meet others with this rare condition. - Publish a quarterly newsletter keeping our members up to date with the Society’s activities including lobbying on rare diseases along with our work with researchers. - Maintain an active Medical Advisory Panel with eminent representatives from each of the medical disciplines involved in Behçet’s to whom questions can be directed. - Manage a website that includes factsheets written by lead Behçet’s clinicians on each of the areas affected by Behçet’s. - Provide a Helpline run by volunteers who have an understanding of Behçet’s. - Facilitate peer-to-peer support groups to minimise the isolation experienced by patients. - Award small personal grants for items that will help members manage their Behçet’s day-to-day. - Host an annual event for members to have fun with their friends, family, and carers and get to know others affected by Behçet’s Become a member Join here: https://behcetsuk.org/how-to-join/