News - Page 90 of 143 - NORD (National Organization for Rare Disorders)

September 30, 2016

TOPIC: Press Releases, Featured News, Patient Stories

A New Partnership that Helps Raise Awareness of Rare Diseases

Posted by Jennifer Huron

We’re thrilled to announce a new partnership that will help raise awareness of rare diseases and connect The Mighty‘s wide-reaching readership with NORD resources. As part of the partnership, NORD, the leading independent 501(c)(3) advocacy organization dedicated to helping people with rare diseases, now has a growing home page on The Mighty and will appear on many… Read More

Tags: Mary Dunkle, Obamacare

September 30, 2016

TOPIC: Events, Get Involved

Running for Rare Named an Official Charity Partner

Posted by Jennifer Huron

32^nd Edition of Skechers Performance Los Angeles Marathon Set for March 19, 2017

Washington, D.C., September 30, 2016—Running for Rare was named an Official Charity Partner of the 2017 Skechers Performance Los Angeles Marathon, it was announced today by the National Organization for Rare Disorders (NORD)®. The race… Read More

Tags: Peter L. Saltonstall, Jack Klugman, Orphan Drug Act, Undiagnosed, Running for Rare, National Institutes of Health (NIH) Undiagnosed Diseases Network (UDN), Pennsylvania, Rare Disease Advisory Council, Pennsylvania Rare Disease Advisory Council, House of Representatives, HB239, Dr. Scott Gottlieb, Food and Drug Administration, Commissioner of the FDA, U.S. House of Representatives, National Organization for Rare Disorders, Better Care Reconciliation Act, American Healthcare Act

September 29, 2016

TOPIC: Advocacy

$1.1 Billion in Federal Funding to Fight the Zika Virus

Posted by Jennifer Huron

Washington, D.C., September 29, 2016 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement from President and CEO Peter L. Saltonstall following President Obama’s signature of the Continuing Resolution today.

“On behalf of the… Read More

Tags: Peter L. Saltonstall, White House, President Obama, Zika, March of Dimes, Genet Testing, protect your healthcare coverage

September 23, 2016

TOPIC: Press Releases, Advocacy

Senate Passes Short-Term Agreement to Accelerate Treatments for 15 Million Sick Children with Rare Diseases

Posted by Jennifer Huron

Unanimous vote extends the Rare Pediatric Disease Priority Review Voucher Program with important policy changes through December

Washington, D.C., September 23, 2016 – On Thursday, the Senate reached an important compromise to accelerate new treatments to help 15 million sick children with rare diseases.

Led by Senators Robert Casey (D-PA), Johnny Isakson (R-GA), and Lamar Alexander (R-TN), the Senate voted unanimously to… Read More

Tags: Peter L. Saltonstall, FDA, Rare Pediatric Disease Priority Review Voucher, S.1878, Advancing Hope Act of 2016 (S.1878), Dr. Marshall Summar, Children's National Director, Division Chief of Genetics and Metabolism, Rare Disease Institute, NORD Board of Directors, Genet Testing

September 22, 2016

TOPIC: Press Releases, Research, Advocacy

NORD Converges on Capitol Hill for Rally for Medical Research Hill Day to Advocate for Increased Funding for the National Institutes of Health (NIH)

Posted by Jennifer Huron

More than 300 organizations join forces to ask Congress to provide robust, sustained, and predictable budget increases for the NIH

Washington, D.C., September 22, 2016— The National Organization for Rare Disorders (NORD) is one… Read More

Tags: Paul Melmeyer, National Institutes of Health (NIH), genetest101, Better Care Reconciliation Act of 2017, BCRA, American Health Care Act, AHCA

September 30, 2016

A New Partnership that Helps Raise Awareness of Rare Diseases

Posted by Jennifer Huron

September 30, 2016

Running for Rare Named an Official Charity Partner

Posted by Jennifer Huron

September 29, 2016

$1.1 Billion in Federal Funding to Fight the Zika Virus

Posted by Jennifer Huron

September 23, 2016

Senate Passes Short-Term Agreement to Accelerate Treatments for 15 Million Sick Children with Rare Diseases

Posted by Jennifer Huron

September 22, 2016

NORD Converges on Capitol Hill for Rally for Medical Research Hill Day to Advocate for Increased Funding for the National Institutes of Health (NIH)

Posted by Jennifer Huron

Topics

Alone we are rare. Together we are strong.®