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September 15, 2015

TOPIC: Featured News

NORD Named Charity of the Week By The Week Magazine

Posted by Jennifer Huron

The WeekThis past week, the National Organization for Rare Disorders (NORD) was named “charity of the week” by The Week magazine. Each charity featured in The Week has earned a four-star rating from Charity Navigator, which rates non-profits on the strength of their finances, control of development and administrative finances,… Read More

September 15, 2015

TOPIC: Advocacy

Bennet, Burr, Warren, Hatch Introduce Bill to Help Patients by Facilitating Faster Development of Drugs for Rare Diseases

Posted by Jennifer Huron

CapitolToday, the Senate introduced the Advancing Targeted Drugs for Rare Diseases Act of 2015 (see press release below).  According to NORD President and CEO Peter L. Saltonstall, “NORD supports legislation that would facilitate the development and approval of safe and effective new drugs for rare diseases.  We are grateful to the… Read More

September 15, 2015

TOPIC: Advocacy, Industry

FDA: Another tool helping developers navigate the difficult road to approval of drugs for rare diseases

Posted by Jennifer Huron

Today, the FDA released a blog post about a new tool for drug developers.  The FDA writes, “With the vast majority of rare diseases still without FDA-approved treatments, we have recently released a new resource for drug developers — draft guidance document — designed to help them navigate the difficult and unique challenges of developing and… Read More

September 14, 2015

TOPIC: Featured News

The LAM Foundation

Posted by Lisa Sencen

1.)    What does it mean to you personally to be a patient organization serving the rare community?

We bring hope to women who have Lymphangioleiomyomatosis or LAM, a frequently fatal lung disease that affects primarily women in their childbearing years. In 20 short years, The Foundation has played a vital role by cultivating a network of world class scientists interested… Read More

September 14, 2015

TOPIC: Advocacy

Urge Your U.S. Senators to Attend Sept. 16th Briefing on Neurological Disease Research

Posted by Jennifer Huron

Invite your U.S. Senators to attend a briefing on the Advancing Research for Neurological Diseases Act (S. 849) on September 16 from 11:30 to 12:30 in the Senate Russell Building, room 485.  For other activities, see this toolkit.

NORD is sponsoring the briefing with the American Academy of Neurology, American Brain Coalition, Brain Injury Association… Read More