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13 public communities
Multiple System Atrophy Trust
1,639 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!
LSN
5,707 members
Welcome to the Lymphoedema Support Network community. The LSN is a registered charity run by people who live with lymphoedema. Lymphoedema is a build up of fluid resulting in swelling that develops as a result of an impaired lymphatic system. This may be because the lymphatic system has not developed properly or through damage or trauma. It can affect any part of the body but is most commonly seen in an arm or a leg. Although thought to be relatively uncommon, a recent study has estimated that at least 240,000 people in the UK may be affected. Although lymphoedema can't be cured, its main symptoms of swelling and the risk of infection in the affected area can, with treatment, be controlled and often significantly improved. The LSN offers a telephone information and support line, quarterly newletters, a wide range of fact sheets, a website, self management advice and much more.
Dyslexia Assist
182 members
You can’t ‘cure’ dyslexia but there are plenty of websites and learning programmes that will take your money and claim they can. Dyslexia Assist was set up by parents with their dyslexic children who have battled through the education system. The website offers all the latest news on theories, developments and opinions, as well as assistance with finding dyslexia friendly tutors. Dyslexia Assist provides a free, comprehensive hub of practical information with tips, ideas and experiences to share with both parents and children…helping you to help your child.
Canadian Organization for Rare Disorders
192 members
CORD is Canada's national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada. 1 in 12 Canadians has a rare disorder. Many others are affected or at risk but remain undiagnosed and unaware. CORD provides information to individuals, and links to other rare disorder support groups and organizations from Prince Rupert, British Columbia to St. Johns, Newfoundland.
FieryBones - RA Community
674 members
Rheumatoid Arthritis, or RA, is a type of auto-immune disease where the body's immune system starts attacking its own tissues and joints. It can happen at any age and is one of the most common form of arthritis. Some of the common symptoms are painful and swollen joints, fatigue and weakness. For people living with RA, it is a daily struggle to balance their personal and professional lives with the unpredictability of this painful disease. FieryBones has been created to connect all the RA warriors and caregivers throughout the world on a single platform. Nothing makes us feel better than reading inspirational blogs of how our RA peers are coping with this illness and sharing our story with the community that truly understands!
The Australian Sjögren's Syndrome Association
2,435 members
The Australian Sjogren's Syndrome Association Inc. was incorporated in Parramatta in 2001, although due to illness of the founder, the association did not commence trading until June 2004 in Mullumbimby, Northern NSW. The name of the founder and president is Ms Beverly Norton. Background The Association was started by Beverly Norton who, in May 2000, was diagnosed with Sjogren's, a disease that Australian doctors knew very little about. Sjogren's (pronounced show-grins) syndrome is a chronic, autoimmune disorder in which the body's immune system mistakenly attacks its own moisture producing glands. The specific causes of Sjogren's syndrome are not known, but multiple factors are probably involved. These include genetics, viruses, hormones or a combination of all of these. It is critical that it is identified quickly and treated otherwise it can be fatal.
Group B Strep Support
746 members
This is a community dedicated to helping those affected by group B Strep (GBS). GBS is a common bacterium that lives in 20-30% of adults, usually with no symptoms or side-effects. Most commonly found in the intestines, it can also live in the vagina of adult women. It is a ‘commensal’ – an organism that lives on another without causing harm. GBS can cause infection, most often in newborn babies. It more rarely causes infection in adults (typically women during pregnancy or after birth, the elderly and those with serious underlying medical conditions causing impaired immune system). Although relatively uncommon, GBS is the most common cause of infection in newborn babies and of meningitis in babies under age 3 months. On average in the UK, one baby a day develops GBS infection - one baby a week dies and one survivor a fortnight has long-term disability.
Oesophageal & Gastric Cancer
6,128 members
For more than three decades, the OPA has fought against oesophageal and gastric cancers, raising awareness, supporting patients, caregivers and their families. Whether you are in the early stages or further along in your journey, the OPA is dedicated to offering support and guidance. We have prepared medically approved booklets and fact sheets all free of charge about the problems these types of cancer can generate, the pains that can be suffered and the effects on the digestive system that can be experienced. Informal meetings for patients and carers are regularly held at regional centres around the UK. OPA have introduced Zoom meetings with a Patient Buddy, please contact us if you would like further details. Call the cancer support helpline on 0121 704 9860 or email enquiries@opa.org.uk and we will be happy to arrange this for you. Instructions for Zoom - https://www.opa.org.uk/edit/files/zoom_instructions_v1.pdf Don't forget our very informative website www.opa.org.uk where you can obtain details of all meetings, useful resource and much much more. If you prefer to chat, our helpline number is 0121 704 9860 or you can email us at enquiries@opa.org.uk
The UK Mastocytosis Support Group
548 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.
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.
Leukaemia CARE
1,277 members
This community brings together patients, carers, advocates and health professionals to share knowledge, experience and guidance to aid each other to cope with a blood cancer diagnosis. Leukaemia Care are committed to making sure that patients, their loved ones and their friends have the right information, support and advice at the point of diagnosis and beyond. Leukaemia Care supports this community with a range of support services to patients and their carers including: a Nurse-led helpline, nurse advisers available every weekday to answer you questions, nationwide support groups, patient and carer conferences, one-to-one Buddy Support, an extensive website, blood cancer information in PDF and booklets, campaigning and advocacy.
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.
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