Social Security To Announce 38 New Compassionate Allowance Conditions

At a press conference this Thursday in Washington DC, Social Security Commissioner Michael J. Astrue will release a list of 38 diseases to be added to the Social Security "Compassionate Allowances" program. NORD President Peter L. Saltonstall will join Commissioner Astrue for the announcement. Compassionate Allowances expedite the review of applications for Social Security Disability. The program was launched with 50 diseases in 2008. Now 38 additional diagnoses are being added. The Social Security Administration (SSA) selected the diseases, with input from NORD the National Institutes of Health and others.

Orphan Drug Workshop Series Launched

FDA's Office of Orphan Products Development is offering an Orphan Drug Designation Workshop that will provide a unique opportunity for all potential drug sponsors—including biotechnology companies, pharmaceutical firms and academic institutions—to learn about the application process for orphan drug designation. NORD is a co-sponsor of the workshops, which will take place on February 25-26 at Keck Graduate Institute and August 3-4 at the University of Minnesota.

Participants are encouraged to bring specific product proposals for at least one candidate orphan drug that holds promise for the treatment of a rare disease. A significant portion of the workshop will be dedicated to preparing applications, including one-on-one guidance sessions with FDA staff members. FDA will keep product and disease information confidential. Final applications can be submitted to the FDA at the close of each workshop. For information or to register:

FDA Workshop Brochure
Registration for the February Workshop

NORD and Discovery Health Partner for Rare Disease Day

NORD and Discovery Health have announced that they will serve as media and program partners for Rare Disease Day, to be observed on Feb. 28. Through on-air and online messages, the two will provide information about rare diseases and voice the themes of the day—that rare diseases are an important public health concern and that additional research is needed to develop new treatments for these diseases. A new program called Disease Detectives, based on the real-life experiences of William Gahl, MD, and the National Institutes of Health Undiagnosed Diseases Program, will air on Rare Disease Day, in honor of the global observance.

Have You Asked Your Governor Yet?

For Rare Disease Day 2010, people across the nation are asking their governors or state legislatures to issue proclamations in support of the day. Typically, such requests must come from a resident of the state. Have you asked your governor yet? Look at NORD's map. to see what states have issued proclamations to date. If yours isn’t one, please submit your request today. Sample letter. Sample proclamation.

Are You Planning A Rare Disease Day Event?

If so, let us know about it. We’ll post information on our map of events so that others will know what you are planning. NORD will host a Rare Disease Day open house on Friday, Feb. 26, from 3 to 6 p.m. at our Danbury, Connecticut, office. Additional information about this will be posted on the U.S. Rare Disease Day website.

The Faces of Rare Disease Day

Photo by Scott Woolums

Cindy Abbott recently climbed Mt. Baldy in southern California as part of her training for her planned attempt to climb Mt. Everest later this spring. Cindy is raising money for the Vasculitis Foundation, a NORD Member Organization. Read Cindy’s story.

Lifetime Caps Still an Important Issue

While the future of health care reform isn’t certain at this point, the issue of lifetime and annual insurance caps remains very important to patients and families affected by rare diseases. NORD has worked with its Member Organizations to focus attention on this issue. Read a recent New York Times article.

Rare Disease Day Research Hall of Fame

Patient organizations, companies, and other Rare Disease Day Partners are invited to submit nominations to the Rare Disease Day Research Hall of Fame. View 2009 Hall of Famers.

We Salute Our Rare Disease Day Partners!

More than 300 patient advocacy groups, government entities, academic institutions, and companies producing orphan products have signed on as Rare Disease Day Partners for 2010. Becoming a Partner means they support the purpose of the day and will display the logo or promote awareness of the day in other non-commercial ways. View our list of Partners for 2010. Learn how to become a Partner.