Welcome to NORD

NORD Announces 2012 Partners in Progress Celebration Honorees

NORD honored members of the Congress, patient advocates, researchers, and companies that have brought new therapies to market on May 15, in Washington, DC. Read More >

NORD Forum Speaker:  Bills Hold Major Promise for Rare Disease Patients

NORD's Corporate Council meeting was held on May 15th in Washington, DC. Learn more about the Corporate Council meeting >

NORD Announces RFPs for 2012

NORD is funding research seed grant opportunities through its international clinical research program. View the RFPs >

6th European Conference on Rare Diseases and Orphan Products

The meeting covers research, development of treatments, health care, social care, public health and support and will be held in Brussels May 23-25. Read More >

Shire Announces Opportunity to Nominate Individuals for the BRAVE Awards

The program is an initiative to acknowledge ordinary people who give of themselves by caring for others in a meaningful, dedicated and selfless manner, recipients receive $10,000. Learn More >

NORD RN Quoted in Compelling Article about Living with Stiff Person Syndrome

The Mobility Project recently published an article about understanding and coping with the challenges of rare diseases. Read the article >

New Cushing's Syndrome Patient Assistance Program

In partnership with Corcept Therapeutics Inc., this program will help patients with certain costs related to their medical diagnosis and care. Learn More >

Thank you for a great Rare Disease Day!

This year, Rare Disease Day was observed around the world on February 29, 2012. View the Rare Disease Day US website to learn more >

Patient Advocacy Leadership (PAL) Awards

The Genzyme PAL Awards program will distribute a total of $100,000 to patient organizations. To apply, organizations must submit an application form, a project proposal and project budget by June 15. More >

New RareConnect Online Patient Community Launched

A new online global community for narcolepsy has been launched through the EURORDIS/ NORD RareConnect Project. Learn More >

NORD Hosts Social Security Administration Discussions

NORD recently hosted a teleconference for current member organizations with the SSA about the Compassionate Allowances Program. Read more and listen to the recording >

NORD Member Organization Interviewed for NY Times Article

AFTD medical experts were interviewed for a recent New York Times article on these rare types of dementia. Read more >

Am. College of Medical Genetics and Genomics Releases Policy Statement

The ACMG has issued a statement that outlines recommended principles to guide clinicians in the clinical application of genome sequencing. Read the statement >

International Standards for Cytogenomic Arrays Consortium

The 2nd Annual ISCA Consortium Conference will be held May 21-22. This consortium aims to create a universal database of genomic variation available to the public.  Read More >

Forum on Orphan Drugs Planned for 2012 Bio International Convention

NORD and Centric Health Resources will host a two-day forum in conjunction with the BIO Convention on June 19-20 to discuss innovations and regulations pertaining to rare diseases. Read more >

NORD VP Invited to Participate in White House Briefing

NORD’s VP of public policy, participated in a briefing on the National Bioeconomy Blueprint, an initiative seeking input on how best to leverage the nation's research investment to address national challenges. More >

DIA Global Forum Rare Disease Section

Several articles in the February 2012 issue of the journal, Global Forum, published by the Drug Information Association, focused on rare diseases.  Read the section >

NORD Forum Speaker:  Bills Hold Major Promise for Rare Disease Patients

NORD's Corporate Council meeting was held on May 15th in Washington, DC. Learn more about the Corporate Council meeting >