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Oct. 29, 2012

TOPIC: Advocacy, Featured News, Patients & Members

So Glad to Have our European Partners at our Conference!

Posted at October 29, 2012 9:04 pm by Mary Dunkle

Two staff members from EURORDIS (Rare Diseases Europe) participated in the conference co-hosted by NORD and DIA last week (U.S. Conference on Rare Diseases and Orphan Products). read more >

TAGS: Global Advocacy, Mary Dunkle, NORD and EURORDIS, patient organizations, Rare Diseases Europe

Oct. 23, 2012

TOPIC: Advocacy, Featured News, Industry, Research

Images from the NORD/ DIA Conference

Posted at October 23, 2012 10:03 pm by Tai Spargo

FDA Deputy Commissioner Stephen Spielberg, MD, PhD, spoke on advancing the regulatory process.

Oct. 23, 2012

TOPIC: Advocacy, Featured News, Industry, Medical, Patients & Members, Research

Rare Disease Regulatory Pathway is Becoming the New Norm

Posted at October 23, 2012 2:11 pm by Mary Dunkle

The regulatory pathway that we have learned from rare diseases is now becoming the paradigm in general, FDA Deputy Commissioner Stephen P. Spielberg, MD, PhD, said this morning in the opening session of Day 2 of the U.S. Conference on Rare Diseases and Orphan Products.

Oct. 22, 2012

TOPIC: Featured News, Patients & Members

NIH Seeking Patient Input for Expansion of Undiagnosed Diseases Program

Posted at October 22, 2012 11:15 am by Mary Dunkle

Patient representatives who missed the recent NIH webinar regarding the planned expansion of the NIH Undiagnosed Diseases Program may still submit input on the questions discussed.

Oct. 19, 2012

TOPIC: Featured News, Medical

FDA advisory panel recommends approval of TWO new agents for HoFH

Posted at October 19, 2012 2:54 pm by E. Michael D. (Mike) Scott

In an extraordinary signal of the progress that is being made to find treatments for some types of rare disorders, an advisory committee to the U.S. Food and Drug Administration (FDA) has recommended approval this week for not just one but two new drugs to treat homozygous familial hypercholesterolemia (HoFH).

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How do you use online communities? Check out new blog by Allie Freitas- disucsses @RareConnect! #raredisease http://t.co/dREPfjeHIw 02:11:17 PM May 13, 2013
#NORD salutes all mothers of children with #rarediseases today & every day! 12:52:57 PM May 12, 2013
Do you know who is performing at our annual gala next week? #NORD #raredisease http://t.co/kTpUyjfdVs 08:21:11 PM May 09, 2013
Thrilled to welcome more patient orgs to our family- Cutaneous Lymphoma Foundation & the Primary Ciliary Dyskinesia Foundation! 02:38:48 PM May 09, 2013
Congrats to #NORD Member Org- Sturge-Weber Foundation! Researchers identified genetic cause of syndrome! http://t.co/EJunYU5f9A … 02:38:02 PM May 09, 2013

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