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Yearly Archives: 2010

The Value of Sharing Experiences in P/P

At the 2010 Annual Meeting in Philadelphia there were many patients and doctors who have consistently attended the meetings as much for fellowship as for information. There were also patients who were newly diagnosed and needed basic education on pemphigus/pemphigoid.

Posted in Issue 61 - Summer 2010

Acronym Smacronym: deciphering which project is right for you

At the Annual Meeting a few weeks ago, and on the feedback forms that we received, a lot of people made note of how hard it is/was to follow along with all the acronyms that those of us immersed (in

Posted in Issue 61 - Summer 2010, Projects

Annual Meetings are More than a Patient-Disease Experience: Caregivers Get Support, Too!

This year’s annual meeting in Philadelphia was again a huge success because of the tremendous amount of information, knowledge, research and hope made available to patients and caregivers. It was also a family reunion for some of the regular attendees

Posted in Issue 61 - Summer 2010

New Hope for Millions

Autoimmune (AI) diseases affect 30 million women—three times more than men—and diagnoses are rising in autoimmune disorders as varied as lupus, celiac, Sjogren’s syndrome and multiple sclerosis. But science has fixes in store. “We’re learning to detect disease earlier,” says

Posted in Around the Globe

Registry Advocacy

IPPF MAB member Dr. Ani Sinha discusses the importance of a disease registry

Posted in Medical, P-P Patient Registry, Registry-based Research

NDRI Facilitates Major Medical Breakthrough in Cystic Fibrosis Research

Cystic lungs provided by NDRI lead to drug discovery in CF treatment.

Posted in Around the Globe

High-Tech Alternatives to High-Cost Care

Mention health care reform and the image that instantly comes to mind is a big government program. But there is another broad transformation in health care under way, a powerful force for decentralized innovation. It is fueled in good part

Posted in Around the Globe

Experts say travel health insurance can be crucial

Plane tickets, check. Passport, check. Medical evacuation insurance? It’s probably not something most people think about when packing for a vacation.

Posted in Around the Globe

F.D.A. Steps Up Oversight of Infusion Pumps

Federal regulators say they are moving to tighten their oversight of medical devices, including one of the most ubiquitous and problematic pieces of medical equipment — automated pumps that intravenously deliver drugs, food and other solutions to patients.

Posted in Around the Globe

An Insurer’s New Approach to Diabetes

The UnitedHealth Group, one of the nation’s largest health insurers, is teaming up with the Y.M.C.A. and retail pharmacies to try a new approach to one of the nation’s most serious and expensive medical problems: Type 2 diabetes.

Posted in Around the Globe

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The P/P Registry has been approved by the Western Institutional Review Board (WIRB) and is actively enrolling participants.

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