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Updated by shirley williams on Jan 24, 2016
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Patient Communities Leveraging the Social WEb

I am Shirley Williams, an advocate of new media; I am especially passionate about how it is being leveraged in health care. I am using this list.ly tool to curate a list of patient communities using the social space. Please add your community or patient communities you know who have successfully used social media
66 roses

" 65 Roses " is what some children with cystic fibrosis call their disease because the words are much easier for them to pronounce. This blog, 66 Roses, is dedicated to finding the cure. Cystic fibrosis is a life shortening genetic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide).

ACOR.org - Association of Cancer Online Resources

Welcome to our cancer online community, find people who are dealing with the same health challenges as you. Join an Online Support Group. Give and Get help. You are NOT alone.

Atrial Fibrillation - For Patients By Patients - StopAfib.org

Atrial fibrillation information for those living with afib-for patients by patients

#BCSM Chat (BCSMChat) on Twitter

The latest from #BCSM Chat (@BCSMChat). The intersection of breast cancer and all things social media. Join us on Monday nights 9 pm ET. Chat moderated by @jodyms @stales @DrAttai. USA

Ben's Friends

BensFriends.org is a network of safe and supportive patient communities for anyone affected by a rare disease. To learn more, please watch the video above then click here. As Seen In... Ben's Friends Mobile App Launched! We're so proud to announce the release of the Ben's Friends iPhone App!!!

Canadian Diabetes Association

Our mission is to lead the fight against diabetes by helping people with diabetes live healthy lives while we work to find a cure. We deliver our mission by:

providing people with diabetes and healthcare professionals with education and services
advocating on behalf of people with diabetes
supporting research
translating research into practical applications

Canadian Skin Patient Alliance

The CSPA is a not-for-profit organization that provides education, information, a supportive online community, and opportunities to create and join local support groups for all Canadian skin patients. The CSPA also provides physicians and researchers with access to patients and their concerns regarding skin health.

Canadian Virtual Hospice

The Canadian Virtual Hospice provides support and personalized information about palliative and end-of-life care to patients, family members, health care providers, researchers and educators.

CareCircle Community-Powered Programs

CareCircle Programs strengthen the ability of friends and family to help individuals get back on their feet, back to work, or back to their normal lives.


CML Advocates Network

Global network of patient groups supporting patients with Chronic Myeloid Leukemia (CML), connecting more than 60 groups in more than 50 countries on all continents

Crohnology

The Crohn's & Colitis Patient-to-Patient Information Sharing Platform. Share and learn what treatments, diets, and alternative therapies work for patients with IBD (Inflammatory Bowel Disease).


Feelalike - Sharing Health Solutions

Feelalike is a health social network that connects people with similar health experiences

FMD Chat - Fibromuscular Dysplasia Support

FMD Chat Board of Directors Sarah E. Kucharski, Chairman/CEO An intimal fibromuscular dysplasia patient, Kucharski founded FMD Chat shortly after her diagnosis with the disease at age 31. She envisioned an international network of peer-to-peer connections for patients, caregivers and healthcare providers with the aim to improve the quality of life for those affected by FMD within this lifetime.

Global Advocate for Neuroendocrine Cancer Patients Announces New Name - International Neuroendocrine Cancer Alliance ...

Global Advocate for Neuroendocrine Cancer Patients Announces New Name - International Neuroendocrine Cancer Alliance (INCA) The International Neuroendocrine Cancer Alliance (INCA) announced its new name, the official one to be used by the organization, which has committed to being the global advocate for neuroendocrine cancer patients.

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#hcsmca

#hcsmca

All you need to know about #hcsmca #hcsmca hosts a tweet chat every Wednesday at 1 pm ET. The last Wednesday of the month is our monthly evening chat at 9 pm ET. hcsmca conversations can also be found on Facebook and LinkedIn. What is #hcsmca?

Health and wellness support groups - Inspire

Inspire connects patients, families, friends, caregivers and health professionals for health and wellness support. Connect with others who know what you're going through.

MyHealthTeams

MyHealthTeams creates social network for chronic condition communities. We believe that when you or a loved one are diagnosed with a disease, it should be easy to connect with people just like you, who can share their experiences, and help you discover the best people around to help you.



Talk to anyone impacted by autism, breast cancer, leukemia, diabetes, ADHD, Alzheimer’s or any chronic disease – and they will tell you it is not easy. They’ll say it’s frustrating, lonely, and feels like they had to “re-invent the wheel.” This is a solvable problem and one we’ve begun to tackle at MyHealthTeams. In June 2011, we launched MyAutismTeam – a social network to help parents of children with autism do just that. One year later we launched MyBCTeam — a social network for women facing breast cancer.


Osteoporosis, osteoarthritis and pain

Osteoporosis, osteoarthritis and pain. 72 likes · 0 talking about this. Osteoporosis is often called the "silent disease." That's because most of the time, bone loss occurs without any symptoms at all. But when osteoporosis becomes severe, it can lead to fractures and a condition called kyphosis.

Patient Commando

Patient Commando creates social impact by providing a platform that amplifies the patient voice, increases patient engagement, and affects practice change by empowering the patient and cultivating collaborative relationships between patient and healthcare providers.

Patients' Association of Canada, Association des Patients du Canada

The Patients' Association of Canada is now Patients Canada.The Patients’ Association of Canada has been established to fill an important gap in the health field. Until now, there have been no national patient-led and patient-governed organizations that speak to the experience that people have as patients. In many public discussions about health care, the patient perspective is presented by health care professionals, disease-based organizations, researchers, or policy makers who have their own points of view that are not the same as those of patients.

PatientsLikeMe

Our Promise PatientsLikeMe is committed to putting patients first. We do this by providing a better, more effective way for you to share your real-world health experiences in order to help yourself, other patients like you and organizations that focus on your conditions

Posts about #hcsmEU on #hcsm

One of the cool things about #hcsm is that there are few barriers to entry. No matter where you are in the world, you can have a conversation about healthcare. You don't have to have a fancy title, X number of years of experience, or work for a certain organization to make a difference.

Rethink Breast Cancer

Launched in 2001, Rethink is the first-ever, Canadian breast cancer charity to bring bold, relevant awareness to the under-40 crowd; foster a new generation of young and influential breast cancer supporters; infuse sass and style into the cause; and, most importantly, respond to the unique needs of young (or youngish) women going through it

Smart Patients

Smart Patients is an online community where cancer patients and caregivers learn from each other about treatments, clinical trials, the latest science, and how it all fits into the context of their experience.

Society for Participatory Medicine

The Society for Participatory Medicine is a 501(c)(3) not-for-profit organization devoted to promoting the concept of participatory medicine, a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

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