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66 public communities
Epilepsy Australia
173 members
Epilepsy Australia is the national coalition of Australian Epilepsy Associations raising our voices as one to advance the cause of all Australians living with epilepsy. Actively delivering counseling, support and information to all who access our services, Epilepsy Australia is committed to raising awareness and understanding of the very real issues faced by those living with epilepsy. The unpredictable nature of seizures can force people to stay at home, fearful of a seizure occurring in public. Would you know what to do if you saw someone having a seizure? A goal of Epilepsy Australia is for every household in Australia to be seizure aware. Our challenge is to build on the success of our Seizure First Aid Awareness Campaign where more than 20,000 Seizure First Aid Kits were delivered to households Australia-wide.
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.
MyDirectives: Make your medical wishes known!
64 members
MyDirectives is the first completely digital emergency, critical and advance care planning service that is secure, easy to understand, and free to consumers to use. Apple iPhone users can also download MyDirectives MOBILE for free in the Apple App Store. MyDirectives and MyDirectives MOBILE are services offered by ADVault, Inc., a privately owned U.S. corporation dedicated to ensuring that emergency first responders, doctors, nurses and caregivers always have access to the most important voice in healthcare - yours. MyDirectives helps consumers record their medical treatment wishes, preferences regarding palliative and hospice care, organ donation, and autopsy, and other critical personal information both on the device, and in the format, that is most convenient and comfortable for them. We then work with healthcare providers and payers, to make the directives available.
Parents of ALD Newborns
99 members
We are here to offer support as you navigate through your babies first few years of life after a diagnosis of adrenoleukodystrophy. Knowledge is power and now you have the power to save your child's life. Some of the information that is floating around on the internet is not correct and we hope to fix that by closely monitoring the info that is posted on this forum.
Memory Health: Alzheimer's Support Group
1,339 members
Welcome to MyBrainTest Health, a social community dedicated to providing evidence based information on memory loss causes, and early stage Alzheimer's & dementia. Many early signs of memory loss symptoms in older adults are first noticed by family members, caregivers, and close friends. This is a safe space where you will find relevant information to answer your concerns, and to share with others in the same situation. See www.mybraintest.org for additional information.
Sharing patient stories - Picker Institute Europe
91 members
The Picker Institute Europe put patients first always. We believe that the only way to improve the quality of care available is to ask YOU, the patient, what you want, need and expect from your treatment. We are committed to measuring, understanding and sharing your feedback so that it can then be used to improve health & social care services and experiences. To contribute to this important conversation, join our community and share your experiences with us!
Active 10
5,936 members
This relaxed supportive walking community is a space to offer support to those starting and continuing their walking journey, including completing Active10. Active10 is a NHS Public Health England campaign and walking app for iOS and Android, helping people to get started with walking 10 minutes a day and for those who just want to get out the door for the first time. Whatever your walking goals, HU Active10 provides peer support to help achieve your aims.
Aspergillosis and Rare Fungal Infection Support
3,879 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!
Achalasia Action
147 members
Welcome to the Achalasia Action (ACAC) community, which has been set up to help people living with achalasia and spasms in the oesophagus. Achalasia is a condition affecting motility and the ability of swallowed food to reach the stomach because of issues affecting peristalsis, the muscular process that propels food into the stomach. Our charity Achalasia Action is registered with the Charity Commission for England & Wales (no 1187367) and runs a website www.achalasia-action.org and a helpline 0300 772 7795. We organise patient support meetings two or three times a year, either online or, subject to COVID19 restrictions, at the Hospital of St John and St Elizabeth, 60 Grove End Road, St John’s Wood, London NW8 9NH. ‘Achalasia Explained’ can be downloaded from the ACAC website www.achalasia-action.org/information-hub.html We also produce a set of YouTube videos: Understanding Achalasia (the first we published) https://www.youtube.com/watch?v=LHWFGdKINpE&t=181s Diagnosing Achalasia https://www.youtube.com/watch?v=zRjzFzwJgnQ&t=378s Treatments: https://www.youtube.com/watch?v=JXLJE4ezKfY&t=361s ACAC Charity https://www.youtube.com/watch?v=A8jvPJZ3qwk&t=148s
Nutrition and Yoga for Health
1,395 members
Holistic health pioneer, yoga teacher and author, Ciara Jean Robert brings you this community. Her wish is to share with you helpful tools on your own unique journey. With a previous background in credit risk, banking, Ciara understands the stresses that can partner corporate life, She successfully transitioned 10 years ago to running her own business, Wholly Aligned. That transition was prompted by her precious first kidney transplant beginning to move through a rejection process and eventual failure. Using nutrition, yoga and inspiring story she has gathered through her own lived experience with her kidneys, she wishes to help you awaken your inner physician. Dwell in all possibilities. Ciara received the gift of a second kidney transplant in October 2019. And is currently embarked inward writing Book 2. Weaving in the incredible experiences of healing and integration, from the impact our words carry, to the influence the quality of breath has on how we feel, to hw a deeply embodied sense of being, is truly what opens up one's mind to the magic of life. Being alive. In sacred recalibration. She is a qualified Naturopathic Nutritional Therapist, a highly experienced yoga professional and writer. And also a big hearted human with an absolute love of life. Live your life each and every day. Dream big, live hopefully. Sign up to her mailing list and learn more on her website in the contact detail section.
Living Well with HIV
1,016 members
This community is for people affected by HIV/ AIDS. If you or someone you know is positive, this is a safe peer support community is for you.
HIV Partners
2,326 members
Forum Link has joined forces with the HealthUnlocked team to create this HIV positive online community. We want to make it easier for HIV positive people to find a range of information and support we all need, particularly when we have just been diagnosed with HIV. We do this by highlighting resources from selected other community sites and encouraging members of this community to post messages online. Whether you are newly diagnosed or have been living with HIV for some time we hope you will find this online community of other people living with HIV useful. For more details see the Forum Link web site at http://www.forum-link.org
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