7 posts tagged “National Kidney Foundation”

Listen Up! Here Comes The Patient Voice

Posted January 20th, 2011 by

In addition to hearing from you through our PatientsLikeMe newsletters, we sometimes get a chance to meet you in person to hear what you have to say about living with your condition.   Here are two videos highlighting interviews we conducted in 2010 with patients just like you.  In the first video, you’ll hear directly from members of our Parkinson’s Community, representing Team PatientsLikeMe at the 2010 Parkinson’s Unity Walk.  The second video is from the U.S. Transplant Games, where we interviewed YellowisJoy, a member of our Transplant Community and National Kidney Foundation’s Team Mid New England. Listen up – here comes the patient voice!

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Extending Boston’s Commitment to Organ Transplantation

Posted August 18th, 2010 by

Attending the National Kidney Foundation’s 2010 U.S. Transplant Games was an eye-opening experience.  And it wasn’t just the thousands of transplant recipients, living donors, and donor families who made the event so memorable.  It was the passionate commitment to transplantation by so many different individuals and organizations.

wallDozens of nonprofits, donor and support groups, and pharmaceutical manufacturers descended upon Madison, WI to meet those touched by transplantation and celebrate their stories.  An incredible number and variety of resources were offered by these organizations to drive donor awareness, support the needs of transplant recipients, and facilitate connections with others (see the photo of Novartis’ “Wall of Inspiration”).  The simple act of pin trading between two people often caused them to open up about their transplantation experience and what brought them to the Games.

As the founding sponsor of the Games two decades ago, Novartis continued to serve as the event’s lead sponsor and pledged its continued support in the future.  Other noteworthy pharmaceutical sponsors of the Games included Pfizer, Bristol-Myers Squibb, Astellas, and Genentech.  Together with Novartis, these organizations have invested many years and many millions of dollars developing the immunosuppressants that transplant recipients need to maintain the health of their organs.

Novartis also demonstrated its commitment to organ recipients last year by partnering with PatientsLikeMe to develop the Transplants Community.  Novartis wants to learn from this Community – just as patients learn from one another – what challenges patients face and what unmet needs can be addressed.  By partnering with patient-centric organizations like Novartis, PatientsLikeMe fulfills its mission of improving patients’ lives by discovering important research insights through shared patient data.

PatientsLikeMe is headquartered just outside Boston, which is coincidentally the city where the first successful kidney transplantation occurred more than 50 years ago.  We are proud to extend Boston’s long-standing commitment to organ candidates and recipients.

PatientsLikeMe member cfidyk