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New Rare Disease Education for Healthcare Professionals Partnership

NORD and Frontline Medical Communications have announced a strategic alliance to increase awareness and understanding of rare diseases. Read the press release >


View Webcast of Energy & Commerce Hearing

Dr. Marshall Summar of NORD and others provided the patient perspective in 21st Century Cures hearing. Read Dr. Summar's testimony


Sign a Petition in Support of the Patients' Access to Treatments Act

Encourage your representatives to support H.R.460, which would limit out-of-pocket costs to patients who need expensive specialty drugs. More >


NORD Provides Input to 21st Century Cures Initiative

NORD has provided recommendations and testimony to advance the discovery, development, and delivery of treatments. More >

News for Patients


Rally for Medical Research

NORD is participating in the 2014 Rally for Medical Research Capitol Hill Day on Sept 18 in Washington, DC. More >


Survey for Myelofibrosis, Polycythemia Vera, and Essential Thrombocythemia

The Mayo Clinic Cancer Center is conducting an online survey of patients with MPNs and their caregivers to gain perspective on what it’s like to live with an MPN. Survey for MF, PV, and ET


FDA Publishes Blueprint for Addressing Rare Childhood Diseases

The FDA has posted a strategic plan to accelerate the development of new therapies for pediatric rare diseases.  More >


Dandy-Walker Patient Registry Launched

The Dandy-Walker Alliance, Inc. has announced a patient registry for people diagnosed with Dandy-Walker syndrome, their family members, and researchers. Visit the registry.

News for Patient Organizations


International Conference on Rare Diseases and Orphan Drugs (ICORD)

The 9th ICORD meeting will take place in the Netherlands, October 7-9. More >


Join NORD's Organizational Membership Community

NORD currently has over 210 organizational members, view the full list and join if your organization isn't already represented. More >


Two Patient-Focused Drug Development Meetings Announced

FDA will host a public meeting on patient-focused drug development for heritable bleeding disorders on Sept 22, and a meeting on idiopathic pulmonary fibrosis on Sept 26. More here and here>


Advocacy-Initiated Draft Guidance Submitted to FDA

PPMD and a coalition of stakeholders submitted the first-ever patient advocacy-initiated draft guidance for a rare disease to the FDA to help accelerate development of potential therapies for Duchenne muscular dystrophy. More >

News for Medical Professionals


American Autoimmune Related Diseases Association (AARDA)

AARDA launched a free autoimmune curriculum for grades 3-8 that aligns with the Common Core Standards. More>


Toolkit to Improve Care for Pediatric Patients

A free toolkit has been developed by the Genetics in Primary Care Institute and providers through the AAP to help pediatric primary care providers integrate genetics into their practice. More>


Department of Defense Peer-Reviewed Medical Research Program (PRMRP)

The FY14 PRMRP is soliciting research applications for 25 topic areas including several rare diseases. More >


2014 Global Pediatric Innovation Summit

Boston Children's Hospital will host its 2nd annual pediatric innovation summit October 30-31, 2014 in Boston. More >

News for Industry


NCATS Proposes Research Based on Shared Molecular Mechanisms

Scientists from the NIH have proposed a research strategy that focuses on finding underlying molecular similarities between multiple rare diseases. More>


NCATS Drug Candidate for Sickle Cell Disease Acquired by Pharmaceutical Company

Aes-103, developed by NCATS and its collaborators, is the first drug that targets the underlying molecular mechanism of sickle cell disease.  More>


Taking on Tomorrow: Global Pediatric Innovation Summit

Boston Children's Hospital will host a Global Pediatric Innovation Summit on October 30-31 at the Seaport World Trade Center in Boston. More>


International Rare Disease Research Consortium (IRDiRC)

The second IRDiRC conference will be held November 7-9 in Shenzen, China, in collaboration with the Beijing Genomics Institute. More>


The National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases. More >

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