2 posts tagged “pharmaceutical companies”

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


PatientsLikeMe and UCB Open Free Online Community for People With Epilepsy in the U.S.

Posted January 26th, 2010 by

Pharmaceutical, Social Media Leaders Examine Real-World Impact of Epilepsy

CAMBRIDGE, MA and ATLANTA, GA — (Marketwire – January 26, 2010) —  Today, PatientsLikeMe, the leading online community for people with life-changing conditions, and biopharmaceutical company UCB open the doors to a free online community for people living with epilepsy in the U.S. Focused on learning from patients’ real-world experiences, the online community allows members to create profiles that record and share their treatments, symptoms, as well as seizure type, frequency and severity.

picture-2“As a patient-centered company, we are constantly seeking innovative ways to enhance and adjust our approaches to meet patient needs,” says Iris Loew-Friedrich, Executive Vice-President, Chief Medical Officer, UCB. “We believe this community will be a source of information that will allow us to better understand people living with epilepsy and may help us design clinical programs that incorporate real-world patient needs and experiences in a measurable way.”

Among the research being conducted, PatientsLikeMe and UCB are analyzing anonymized data shared by participating epilepsy patients, with their consent, via an online clinical survey built into the site to measure patients’ quality of life (including cognitive, social and physical function). Completed by 60 patients testing the site since mid-November, initial survey results show the patients are most concerned with the cognitive impact of living with epilepsy (such as lack of concentration or memory loss).

Adds Ben Heywood, co-founder and president of PatientsLikeMe, “Patients are telling us that, in addition to seizures, there are many more significant aspects to the disease. It’s this type of real-world data and insight about epilepsy that is going to change how this disease is treated.”

To better understand the impact of medications that treat epilepsy in the real world, PatientsLikeMe and UCB are also taking the lead in implementing a drug safety program within this patient community. The program is designed to capture and report adverse events associated with approved UCB epilepsy therapies to the U.S. Food and Drug Administration (FDA).

Last June, PatientsLikeMe and UCB announced this strategic partnership to build an online community for people living with epilepsy, which debuts today at www.patientslikeme.com/epilepsy/community.

You can see the full news release from PatientsLikeMe and UCB on Marketwire.

PatientsLikeMe member lscanlon