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7 public communities
MPN Voice
10,425 members
MPN Voice provides information and emotional support to patients with Myeloproliferative neoplasms. MPNs are chronic diseases affecting the levels of blood cells in the body, the three main types are Essential Thrombocythaemia (ET), Polycythaemia Vera (PV) and Myelofibrosis (MF). People affected by MPNs often feel isolated and need support and accurate information about their MPN, MPN Voice provides this support and information via the website, patient forums and this online forum at HealthUnlocked which gives people with a MPN a place to ask questions and discuss their condition, symptoms, medication and other related concerns with fellow patients.
FABED
213 members
FABED was founded in 2005 by 2 families with a total of 5 Eosinophilic Children. We are a UK based non profit Charity who strive to raise funds to further the awareness, education and support for families and professionals who deal with Eosinophilic disorders on a daily basis. We feel it is essential for families living with these disorders to be able to access support and information to aid early diagnosis and the correct medical support.
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.
Research Opportunities
935 members
We believe that the voice of the patient should hold tremendous influence over the decisions made within the healthcare industry - that is why we created the Research Opportunities community. This reply-only community is a one-stop destination for all things related to research. Whether you’re looking to take part, or simply just want to learn more about the scientific process, we have something for everyone. Participation in research is subject to the inclusion criteria of the specific research opportunity, by joining the HealthUnlocked research community you are not guaranteed success. How do I get the most out of the community? We may notify you if there is a new opportunity that we believe would make a good match for you. This could be a private message, or an email. Personalized recommendations of research opportunities are based on your HU member profile, it is essential that you complete the setup of your profile, and ensure it is up to date: https://healthunlocked.com/profile/edit Please note, you will only receive emails if you have opted-in to receive marketing emails. You will need to make sure you have ticked ' Email me about: Opportunities (e.g. surveys, clinical trials, paid market research, new patient communities) that might interest me' in your email settings. Check your email settings now: https://healthunlocked.com/email-notifications
Fight MPN
808 members
Welcome to the Fight MPN community! This is a safe space for anyone affected by myeloproliferative neoplasms (MPN) to find support, share advice and meet others who truly understand. Whether you're newly diagnosed, have been living with MPN for years, or caring for someone affect, this community is for you. Why not introduce yourself today: https://healthunlocked.com/fight-mpn/write
AMN EASIER
1,313 members
AMN Easier was set up to help men and women who have adrenomyeloneuropathy (AMN) - to help make this disease a bit easier to live with. AMN EASIER provides information and support by (1) providing answers to health questions from other AMN patients with experience of the disease; (2) showing what other AMN patients are doing and thinking; (3) describing ideas and possibilities for therapies that could help
IBS Network
47,543 members
The IBS Network is the national charity that helps people with Irritable Bowel Syndrome (IBS) and has provided support to those with the condition and to healthcare professionals for over 25 years. Funding for the charity is received from a number of sources, including: annual memberships, an online shop for purchasing the ‘Can’t Wait’ card, Radar keys and other useful aids, in addition to income from legacies.