Transplantation Community Sites, FaceBook Groups and Forums

The PatientsLikeMe - Transplants Community

• Description: "PatientsLikeMe is committed to providing a better, more effective way to capture valuable results and share them with patients, healthcare professionals, and industry organizations that are trying to treat the disease."
• Quality: "Founded in 2004 by three MIT engineers whose collective experience spans from "running the world's only non-profit biotechnology laboratory to large-scale online commerce applications, PatientsLikeMe is a privately funded company dedicated to making a difference in the lives of patients diagnosed with life-changing diseases. Our personal experiences with ALS (Lou Gehrig's disease) inspired us to create a community of patients, doctors, and organizations that inspires, informs, and empowers individuals. We're committed to providing patients with access to the tools, information, and experiences that they need to take control of their disease."

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Donate Life America

• Description: Donate Life America, formerly the Coalition on Donation, was founded by the transplant community in 1992 to educate the public about organ, eye and tissue donation and avoid duplication of effort.
• Quality: "Donate Life America assists in mobilizing the transplant community to educate the American public on the need for organ, eye and tissue donation and motivating the public to make an actionable donor designation. The organization publishes brochures, program kits and other materials; provides technical assistance and referral services; coordinates the national campaign for organ, eye and tissue donation; identifies measurable best practices and leads the Donor Designation Collaborative."

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TransplantCafé.com

• Description: "Increasing transplant awareness through personal profiles, interactive tools, friendships, blogs, discussions, groups, events and networking!"
• Quality: A huge community with active photo, news, discussion and video streams.

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Transplant Living

• Description: "Join our community of organ transplant candidates, recipients, families and friends who are interested in learning more about the transplant experience. We'll provide you with helpful tools and information to help you and your loved ones before, during and after your transplant."
• Quality: Accredited by HONcode.

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WebMD® - Organ Transplant Community

• Description: "Organ transplant is serious business. Whether waiting on a list or recovering from the gift of life, talk with others and get support here."
• Quality: Accredited by HONcode.

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MDJunction - Organ Transplants Support Group

• Description: "A community of patients, family members and friends dedicated to dealing with Organ Transplants, together."
• Quality: Accredited by HONcode.

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MedHelp - Transplants Community

• Description: "The MedHelp site connects people with the leading medical experts and others who have similar experiences. Today, MedHelp empowers over 5.5 million people each month to take control over their health and find answers to their medical questions. MedHelp has over 14 years of accumulated information from doctors and other patients across hundreds of conditions."
• Quality: Accredited by HONcode.

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TransplantBuddies Support Network

• Description: "We are an online community of sharing, caring, friendly individuals from all over the world, that have been or will be touched by an organ transplant."
• Quality: "Established in 1999, the TransplantBuddies site provides information about the transplant process, resources covering drugs and side effects, and daily discussions about living life as a transplant patient. The site also includes members' photos and life stories covering experiences of both transplant recipients and donors."

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National Kidney Foundation

• Description: "The National Kidney Foundation, Inc. (NKF) is a voluntary health agency dedicated to preventing kidney diseases, improving the health and well-being of individuals and families affected by these diseases, and increasing the availability of all organs for transplantation."
• Quality: "2010 marks the Foundation’s 60th anniversary, and its 20th year as organizer of the U.S. Transplant Games."

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Facebook is a free social networking site where users can join groups. In these groups, members can post messages, interact with others or find relevant content. A few of the numerous transplantation groups:

Pre and Post Heart and Lung Transplant

• Description and content: "This is a support group for paitents, familys and friends of patients to come and discuss their fears and or questions about heart and lung transplantation."

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Kidney Cafe - Kidney Disease Awareness and Discussion Forum

• Description and content: "This is a support group for those with kidney disease. This group serves as an information portal for those who are interested in learning about chronic kidney disease, end stage renal disease, dialysis, and kidney transplantation. This is also a place for those with kidney disease to share their experience and openly discuss topics related to kidney disease."

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NHS Organ Donor Register Awareness Campaign

• Description and content: "Every year the lives of thousands of people are saved or transformed through organ transplantation. By joining the NHS Organ Donor Register you can help increase this number."

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Transplant Kids

• Description and content: "This group is for transplant kids everyone is welcome whether you are a transplant kid, have a child needing on or who has had a transplant, a freind or family member or just someone interested in organ donation/transplantation."

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Organ Transplant / Donation

• Description and content: "If you are a family member, or you are a supporter, or you had an organ transplant or donated anything, this is a group for you! What I'm hoping to do is raise awareness."

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American Society of Transplantation

• Description and content: "The American Society of Transplantation (AST) is an organization of more than 3,000 transplant professionals including surgeons, scientists, nurses, pharmacists, researchers, physicians, and coordinators."

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TransplantCafe.com a Community for People Touched by Transplantation!

• Description and content: "The community and social network for everyone touched by life saving transplantation and it's facilitators. Members get to interact and promote awareness through personal profiles, blogs, discussions, forums, videos and photos, invite friends and more!"

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Lung Transplantation: Taking Flight with New Life

• Description and content: "Those who have HAD, or WAITING for a lung, lungs, or heart/lungs transplant will find this group a helpful addition. Family and Friends will find connections to make and learn more about this amazing operation and how it changes lives in the most wonderful way."

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Fans of Second Wind Lung Tranplant Association

• Description and content: "To improve the quality of life for lung transplant recipients, lung surgery candidates, people with related pulmonary concerns and their families, by providing support, advocacy, education, information and guidance through a spirit of service, adding years to their lives and life to their years."

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Kidney-Pancreas Transplants

• Description and content: "This is a group where people have had a kidney-pancreas transplant (KPTX)."

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Transplantation at Mayo Clinic

• Description and content: "Transplant teams in Arizona, Florida and Minnesota apply novel techniques to improve care for their patients. These collaborations produce outcomes that set Mayo's transplant programs in high standing with national norms and reinforce their worldwide reputation for quality and excellence."

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Click here to see other transplantation-related Facebook groups.