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13 public communities
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!
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.
Lynch Syndrome UK
115 members
Lynch syndrome (LS) is a genetic disorder that causes an increase in certain cancers at an earlier age than usual. There about 12 cancers that can be affected, the commonest are large bowel cancer and rectal cancer. After that, the next most common is womb cancer. LS tends to run in families so it is usual to find than people in different generations have one of these cancers. Find out more on our website lynch-syndrome-uk.org
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.
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.
L-W-O Community
163 members
Welcome to the L-W-O Community. We are a non-profit group set up in September 2013 for anyone who lives with lymphoedema or a lymphatic malformation. L-W-O is based in the UK, but we do have a global following. There is thought to be over 400,000 people in the UK living with lymphoedema. We are an established Community who provide non-medical tips and advice for our members. Lymphoedema takes a while to come to terms with, as you do, the more positive you can be about your condition then the easier it becomes to live with. Please remember that lymphoedema is manageable with the right treatment. L-W-O’s aim is: A community that brings people together for a common cause and shared interest in lymphoedema Promote self-care and positivity To encourage you to become your own advocate Share stories about the lives of those living with lymphoedema Share new research, campaigns and debates from the lymphoedema community Voice loud and clear - Lymphoedema exists, we exist
Living with Reflux - Babies & Children
102 members
Living with Reflux supports families with children suffering from Gastro-Oesophageal Reflux (GOR) & Reflux Disease (GORD), advised by our 'Medical Advisory Board'. As the Uk's national children's charity we understand feeling unheard and exhausted is too common a phenomenon within families living with infants and children with reflux. That’s why we are here to help support you and your whole family. We have several "admins" that are here to help if you feel you have a question or query, please do not hesitate to contact us at this address: support-admin@livingwithreflux.org We are very proud of the friendliness and supportive nature of our forum, and take pride in the fact that members feel safe and understood here. TOGETHER in numbers we can start to raise the profile of this condition, push for better understanding and gain faster support. Feel free to join us ask questions we look forward to meeting you. Your Living with Reflux Team Living with Reflux (LwR) is registered with the UK'S Charities Commission England and Wales ( Number: 1132614)
Colon Cancer Connected
13,742 members
Welcome to the Global Colon Cancer Association's HealthUnlocked Community! HealthUnlocked is a social network for health. By finding others with similar health backgrounds, you can take on day to day health concerns together. The Global Colon Cancer Association is the voice for the millions of colon/bowel (CRC) cancer patients worldwide. We advocate for patient centered policy around the globe to ensure increased awareness and screening, access to quality medical treatments and help our member organizations collaborate, innovate and leverage the full potential of effectuating change. The GCCA also supports the creation of new patient advocacy groups in developing areas which have no CRC organizations. The GCCA unites all stakeholders in the battle against this disease with one unified voice.
Aspergillosis and Rare Fungal Infection Support
3,861 members
Serious fungal infections are very rare but also very under-diagnosed and that has several consequences. 1) There are many more cases than we currently know about 2) People who are diagnosed can be very isolated and benefit from community support This community is intended to address these issues by informing and educating people in the UK about serious fungal infections, what to look out for, how to get diagnosed and where the expert help is in the UK. We also feel that informing patients is a great way to support their medical teams. The National Aspergillosis Centre (www.nationalaspergillosiscentre.org.uk), currently based in Manchester is the main UK centre for the serious fungal infections caused by Aspergillus (see aspergillosis.org) and is where admin of this community is based, so we have all we need t to advise you on aspergillosis - maybe even get you a referral to this centre if warranted. This is also the site of the Mycology Reference Centre in Manchester (http://mrcm.org.uk/) which is a big skill base for the identification of all pathogenic fungi, consequently, we can support the diagnosis and treatment of other rare fungal diseases like cryptococcal meningitis, Candida bloodstream infection, Pneumocystis pneumonia and more. Note that we only support people who can use the UK NHS and only for questions and conversation about serious rare fungal infections and NOT the very common infections that you should be consulting your GP or pharmacist about - we cannot replace your relationship with your medical team but we may be able to help them help you. Any entries that seem to us to be better dealt with by your medical team first will be deleted. Any non-UK questions will also be deleted - sorry, but we are funded by the UK taxpayer and they have to come first!
Stanmore Young Spine Group
188 members
The Royal National Orthopaedic Hospital NHS Trust (RNOH) is the largest orthopaedic hospital in the UK, and is regarded as a leader in the field of orthopaedics both in the UK and world-wide. The RNOH provides a comprehensive range of neuro-musculoskeletal health care, ranging from acute spinal injury or complex bone tumour to orthopaedic medicine and specialist rehabilitation for chronic back pain sufferers. This broad range of services is unique within the NHS. As a national centre of excellence, the RNOH treats patients from across the country, many of whom have been referred by other hospital consultants for second opinions or for treatment of complex or rare conditions.
COPD Friends
3,571 members
We are peer support community for people living with COPD. Join us to share your story and experiences, ask questions and support others. Connect with others like you today!
South West Wales Neurological Alliance
286 members
We are community that supports individuals, groups and organisations that represent Neurological Conditions and those associated with their care; in Neath Port Talbot, Swansea and Bridgend, Wales.
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