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October 19, 2015

TOPIC: Uncategorized

NORD Announces New VP of Patient Services and General Counsel

Posted at October 10, 2015 03:58 pm by Jennifer Huron

The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit committed to the identification, treatment and cure of rare diseases, announces the appointment of two new hires: Catherine Blansfield, M.A., B.S., R.N., has been appointed as Vice President of Patient Services and Lisa Terrizzi, J.D., as General Counsel.

“As NORD pioneers new ways to help the 30 million Americans… Read More

August 10, 2015

TOPIC: Uncategorized

Member Spotlight: Cure SMA

Posted at August 8, 2015 02:00 am by Lisa Sencen

Cure SMA is a voluntary-driven, non-profit organization dedicated solely to eradicating SMA by promoting and supporting research, helping families cope through informational programs and support, and educating the public and the medical community about SMA.

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

Spinal muscular atrophy is the number one genetic cause… Read More

August 3, 2015

TOPIC: Uncategorized

Requests for Proposals

Posted at August 8, 2015 10:15 am by Lisa Sencen

The NORD Research Grant Program provides seed-money grants to academic scientists for scientific and/or clinical research. The hope is that these studies will ultimately lead to new diagnostics, treatments, and/or cures for rare diseases. NORD’s program provides grants for the study of diseases for which there are few other sources of funding. Grants provided through the NORD program are… Read More

July 23, 2015

TOPIC: Uncategorized

NORD Issues Statement on FDA’s New Associate Director for Rare Diseases

Posted at July 7, 2015 10:43 am by Jennifer Huron

The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on today’s announcement that Jonathan C. Goldsmith, MD, FACP, will lead the Rare Diseases Program in the Center for Drug Evaluation and Research (CDER) Office of New Drugs at the Food and Drug Administration (FDA).

NORD congratulates Jonathan C. Goldsmith,… Read More

July 20, 2015

TOPIC: Uncategorized

Member Spotlight: WSCTF

Posted at July 7, 2015 11:23 am by Lisa Sencen

Worldwide Syringomyelia & Chiari Task Force’s purpose is to educate the world about Syringomyelia. The organization provides those affected, with hope by advocating research for a cure. As the organization grows, it will provide direct assistance to those diagnosed with Syringomyelia by providing durable medical equipment to all who qualify by having a letter from their treating physician confirming diagnosis & disability; and… Read More