Myozyme®/Tiffany House

Myozyme®/Tiffany House

Tiffany House was diagnosed with Pompe disease at age 11 after a childhood of multiple respiratory...

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Uploaded on Feb 28, 2013

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Ronald J. Bartek

Ronald J. Bartek

Ronald Bartek cofounded the Friedreich’s Ataxia (FA) Research Alliance (FARA) to support families and...

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Uploaded on Feb 28, 2013

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Ashley and Donna Appell

Ashley and Donna Appell

Ashley Appell is one of over 25 million Americans living with a rare disease. Ashley was born with...

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Nancy Wexler, PhD

Nancy Wexler, PhD

Dr. Nancy Wexler is the President of the Hereditary Disease Foundation, started by her father Milton...

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NIH Undiagnosed Diseases Program

NIH Undiagnosed Diseases Program

The Undiagnosed Diseases Program (UDP) uses the unique combination of medical expertise and special...

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Sharon Terry

Sharon Terry

Sharon Terry began her journey as a patient advocate setting out to accelerate research...

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Hal Dietz, MD

Hal Dietz, MD

Dr. Hal Dietz discovered fibrillin-1 as the underlying genetic cause of Marfan syndrome (MFS) in 1991....

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Uploaded on Feb 28, 2013

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8) FDA Orphan Incentive Programs - Advancing orphan products through orphan designations, grants, and facilitation

8) FDA Orphan Incentive Programs - Advancing orphan products through orphan designations, grants, and facilitation

FDA’s Office of Orphan Products Development (OOPD) was established in 1982. Its critical role in...

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7) Industry-Investors-Academia - Developing products in the spirit of the ODA

7) Industry-Investors-Academia - Developing products in the spirit of the ODA

The discovery, development, and clinical testing of products whether for rare or common diseases can be...

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6) Rare Disease Advocacy Groups - Organization, education, support, research, advocacy, and action

6) Rare Disease Advocacy Groups - Organization, education, support, research, advocacy, and action

The years surrounding the passage of the Orphan Drug Act spurred a national awareness of the challenges...

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5) Henry Waxman & Orrin Hatch - Author and cosponsors of the Orphan Drug Act (ODA)

5) Henry Waxman & Orrin Hatch - Author and cosponsors of the Orphan Drug Act (ODA)

Representative Henry Waxman was the principal author of the original 1983 Orphan Drug Act (ODA)....

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Uploaded on Feb 28, 2013

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4) NIH/Office of Rare Diseases Research - Advancing rare disease information, collaboration, and research

4) NIH/Office of Rare Diseases Research - Advancing rare disease information, collaboration, and research

The National Institutes of Health (NIH) Office of Rare Diseases Research (ORDR) led by Dr. Steve Groft...

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3) Robert Campbell, Jr, MD - representing Clinician/product developers and advocates; Developed the artificial rib humanitarian use device

3) Robert Campbell, Jr, MD - representing Clinician/product developers and advocates; Developed the artificial rib humanitarian use device

Dr. Robert Campbell developed the Vertical Expandable Prosthetic Titanium Rib (VEPTR), saving the lives...

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3) Jana Monaco - representing Parent advocacy for newborn screening and medical foods

3) Jana Monaco - representing Parent advocacy for newborn screening and medical foods

Jana Monaco has been an advocate for the rare disease community since her son Stephen suffered severe...

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Hemin and Desiree Lyon - representing 1st approved orphan designated drug and patient advocacy

Hemin and Desiree Lyon - representing 1st approved orphan designated drug and patient advocacy

Hemin was the first orphan designated drug to receive marketing approval in 1983. It is used to relieve...

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Abbey Meyers - Champion for ODA and founder of National Organization for Rare Disorders

Abbey Meyers - Champion for ODA and founder of National Organization for Rare Disorders

Abbey Meyers pioneered the development and passage of the 1983 Orphan Drug Act, catalyzed by her...

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Uploaded on Feb 28, 2013

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RECALLED – Bird Food

RECALLED – Bird Food

February 27, 2013 – Product Recall – United Pet Group Inc., Voluntarily Withdraws "Ultra Blend...

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Uploaded on Feb 27, 2013

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RECALLED – Bird Food

RECALLED – Bird Food

February 27, 2013 – Product Recall – United Pet Group Inc., Voluntarily Withdraws "Ultra Blend...

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Uploaded on Feb 27, 2013

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