PatientsLikeMe announces the launch of a free online community for people who have received organ transplants, including heart, lung, liver and kidney. Global healthcare leader Novartis is supporting the development of this community.
According to the United Network for Organ Sharing, there were 23,000+ organ transplants in the United States last year, with another 100,000 people on the wait-list. Through this new community, organ recipients can now monitor and share their progress and address the issues that often arise after a transplant, such as concerns about organ rejection or adherence to medication. PatientsLikeMe's open platform allows patients to learn from each other and advance research into the experience of living with a new organ.
"When my brother Stephen passed away he was able to donate his kidney. It made his death heroic and we saw first-hand how important it was to give back," says Ben Heywood, president and co-founder of PatientsLikeMe, whose brother's experience with amyotrophic lateral sclerosis (ALS) inspired the creation of the company. "This community allows patients to help each other by sharing their experiences living with a transplanted organ."
The new transplants community builds on an existing relationship between PatientsLikeMe and Novartis to learn from people with multiple sclerosis (MS). "We need to be closer to patients to understand their experience and their needs. An online experience allows patients to open up and share in a more personal and frank way," says Novartis CEO Joe Jimenez. "Our commitment to supporting this transplant community will shape the way we do our work, and ultimately help improve transplant patient outcomes now and in the future."
"Giving back" is a major discussion topic among organ recipients and is the theme of two new programs being launched by PatientsLikeMe. The first is a peer-program developed in conjunction with Novartis called PatientsLikeMeMentorsTM. This program allows patients to create one-on-one relationships to share best practices and answer common questions about their treatment journey. PatientsLikeMeMentorsTM was launched last month in the PatientsLikeMe MS community and will be available in April 2010 in the transplants community.
The second program, PatientsLikeMeInMotionTM, helps members who share the most data to raise money for their teams participating in fundraising events. This program is supported solely by PatientsLikeMe, which will make donations on behalf of patients to non-profit organizations of their choice.
Transplants marks the 12th disease community for PatientsLikeMe.
PatientsLikeMe® (www.patientslikeme.com) is the leading online health community for patients with life-changing conditions. PatientsLikeMe creates new knowledge by charting the real-world course of disease through the shared experiences of patients with ALS, multiple sclerosis, Parkinson's disease, HIV, mood conditions (including depression, bipolar, anxiety, OCD and PTSD), fibromyalgia, chronic fatigue syndrome/myalgic encephalomyelitis, epilepsy and organ transplants. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world. PatientsLikeMe endeavors to create the largest repository of real-world disease information to help accelerate the discovery of new, more effective treatments.