Conversations Contributors - Beth McGinn

Beth McGinn is a political communications veteran of Capitol Hill and several congressional campaigns. She currently handles all media relations activities for the American Road & Transportation Builders Association.

Before coming to ARTBA, McGinn served as communications director for the House Judiciary Committee and spent several years as spokesperson for the Chairman Lamar Smith (R-Texas).  

Conversations Contributors - Durhane Wong-Rieger

Durhane Wong-Rieger, PHD is the founder and head of the Consumer Advocare Network, a national network to provide a common voice for patients organizations. She is President of the Canadian Organization for Rare Disorders, President and CEO of the Institute for Optimizing Health Outcomes and past Chair of the International Alliance of Patients’ Organizations. She is a licensed Master Trainer with the Stanford-based Living A Healthy Life with Chronic Conditions.

Conversations Contributors - Melissa Hogan

Melissa Hogan is a lawyer by profession, writer by passion, and advocate by necessity.

Greater Integration of Patient Input in Regulatory Decision-Making

10.10.13 | By

In the last 20 years, the Prescription Drug User Fee Act (PDUFA) has resulted in timelier patient access to more than 1,500 new drugs and biologics, decreasing review times for these treatments by more than 60 percent.

Conversations Contributors - Andrew Milmore

Andrew Milmore graduated from Fordham University where he played on the football team and started a chapter of Uplifting Athletes to raise money for a pediatric brain cancer patient named Ty Campbell. Ty passed away last October, (in fact the one year anniversary of his death is the 17th) and Andrew was inspired to continue the fight against rare diseases by joining the Uplifting Athletes team full time after graduation.

Conversations: Medicines in Development for Rare Disease

10.08.13 | By

The world’s biopharmaceutical research companies continually strive to develop new medicines that prevent diseases, improve patient health, and help save lives.  There are currently more than 5,000 medicines in development globally.

Conversations Contributors - Cathy Collet

Cathy Collet earned her B.S. degree from Saint Mary¹s College and her M.S. degree in mathematics from the University of Notre Dame. After several jobs in industry, she co-founded Collet and Schafer, Incorporated in 1994.

She focuses extensively on industry benchmarking studies, particularly in the utility sector.

When her mother was diagnosed with ALS in 1996, her family found it outrageous that the prognosis was the same that Lou Gehrig faced in 1939.

Conversations Contributors - Sharon F. Terry

Sharon F. Terry is President and CEO of Genetic Alliance, a network of more than 10,000 organizations, of which 1,200 are disease advocacy organizations.  Genetic Alliance enables individuals, families and communities to reclaim their health and become full participants in translational research and services.

Conversations

On 10/17, PhRMA will host a Twitter chat session around the subject of medicines in development for rare diseases. What are the shared priorities and interests of the diverse rare disease community that should be discussed in the Tweetchat?

Contributors Respond

Week in Review

10.04.13 | By

The significant disease progress we've made reminds us to not only recognize and appreciate what we've already accomplished on behalf of patients, but also to look into the future and determine what more can be done.

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