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Rare Disease

President Trump Shines Light on Rare Disease Advocate Megan Crowley, Medical Innovation

Amicus Therapeutics Chairman and CEO John Crowley and daughter Megan Crowley

Washington, DC, March 6, 2017 — The Associated Press’ Carolyn Y. Johnson reports that President Donald J. Trump, in his first address to Congress on February 28, introduced the country to a young woman seated next to her father — a man who once aspired to be a fighter pilot, but for nearly two decades has made a career out of trying to cure his daughter and son of a rare, life-threatening disease.

In broad strokes, President Trump sketched the outlines of their story: As a baby, Megan Crowley was diagnosed with Pompe disease, a genetic disease that causes progressive muscle weakness. Continue reading

Opinion on Rare Disease Day 2017: ‘It’s Time to Close the Innovation Gap on Rare Diseases’

Washington, DC, February 28, 2017On Rare Disease Day 2017, Jennifer Nieto Carey, Vice President of Federal Government Relations and Alliance Development at California Life Sciences Association (CLSA), and Julia Jenkins, Executive Director of the EveryLife Foundation for Rare Diseases, write in The Hill:

This week, more than 300 rare disease patients and advocates will descend upon Washington to call on Congress and the new administration to take critical actions to close the innovation gap for the 95 percent of rare diseases that currently do not have one single FDA-approved therapy.

A rare disease affects fewer than 200,000 people in the United States. Yet, there are more than 7,000 such conditions affecting 30 million people, more than half of whom are children. Around a third of these children do not live beyond age five.  Continue reading

Event: HINJ, BioNJ, NJ Rare Disease Alliance, NORD to Host ‘New Jersey Rare Disease Day 2017’ on February 27

New Brunswick, NJ, February 11, 2017 — New Jersey’s rare disease community will gather to celebrate Rare Disease Day 2017 on Monday, February 27 from 9:00 a.m. to 12:00 p.m. at the New Jersey Business and Industry Association (NJBIA) at 10 West Lafayette Street in Trenton.

The half-day event will be co-sponsored by BioNJ, the HealthCare Institute of New Jersey (HINJ), New Jersey Rare Disease Alliance and NORD.

The morning will begin at 9:00 a.m. with coffee, pastries and networking, followed by speakers from the rare disease community, including patients, patient advocates, legislators, biomedical healthcare professionals and life sciences community leaders. Continue reading

Save the Date! ‘New Jersey Rare Disease Day 2017’ Set for February 27 in Trenton

Rare Disease DayTrenton, NJ, January 29, 2017 — New Jersey’s rare disease community will gather to celebrate Rare Disease Day 2017 on Monday, February 27 from 9:00 a.m. to 12:00 p.m. at the New Jersey Business and Industry Association (NJBIA) at 10 West Lafayette Street in Trenton.

The half-day event will be sponsored by BioNJ, the HealthCare Institute of New Jersey (HINJ), New Jersey Rare Disease Alliance and NORD.

The morning will begin at 9:00 a.m. with coffee, pastries and networking, followed by speakers from the rare disease community, including patients, patient advocates, legislators, biomedical healthcare professionals and life sciences community leaders. Continue reading

FDA Designated a Record Number of Orphan Drugs Last Year

STAT PharmalotBoston, MA, February 12, 2016 ― Pharmalot’s Ed Silverman reports on STAT that orphan drugs may target small patient populations, but they are racking up big numbers at the Food and Drug Administration.

Last year, the agency received a record 472 requests from companies to have their medicines designated as orphan drugs.  And the FDA agreed to award 354 designations, which was a 22 percent increase over 2014.

As for approvals, Silverman reported that the agency endorsed 41 orphan medicines, just seven fewer than the previous year, according to the FDA Office of Orphan Products Development. A designation, by the way, means the FDA has decided a drug qualifies for orphan status and takes place before a drug is approved. Continue reading

NJ Rare Disease Alliance Event Set for March 16 in Trenton

Ramsey, NJ, March 13, 2015 ― The New Jersey Rare Disease Alliance, a newly formed organization dedicated to improving the lives of the 800,000 rare disease patients in the state Jersey, is hosting its first event on Monday, March 16 at the Wyndham Garden Hotel, 1 W. Lafayette Street, Trenton, NJ.

Supported by BioNJ and NORD (National Organization for Rare Disorders), the event coincides with the Rare Disease Day and Month events planned all over the world.

An hour-long program at 12:00 noon will focus on the “Rare Disease Paradox: Patients are Common, Treatments are Not” and will be moderated by rare disease patient advocate Bill Cummings. Continue reading

Rep. Leonard Lance to Chair Congressional Rare Disease Caucus

Washington, DC, December 17, 2014 ― Congressman Leonard Lance (NJ-07) has announced he will continue as the Republican Chair of the Congressional Rare Disease Caucus in the 114th Congress that will begin in January.  Lance has chaired the caucus for four years with Congressman Joe Crowley (NY-14), who will continue to serve as the Democratic Chair.

The Congressional Rare Disease Caucus is a forum for Members of Congress to voice constituent concerns, collaborate on ideas, facilitate conversations between the medical and patient community and build support for legislation that will improve the lives of people with rare diseases. Continue reading