domingo, 5 de febrero de 2017

Rare Disease Day at NIH 2017 | National Center for Advancing Translational Sciences

Rare Disease Day at NIH 2017 | National Center for Advancing Translational Sciences


NIH Twitter Chat

Join NIH and NCATS for a Twitter chat on rare diseases Feb. 21, 2017 at 1 p.m. ET. Using #NIHChat, follow the conversation.

Have a Rare Disease?

The Genetic and Rare Diseases Information Center (GARD) offers credible, up-to-date health information for many rare diseases.

Rare Disease Patient Profiles

Alani Daniels suffers from congenital generalized lypodystrophy
Hear stories from rare disease patients and their families about the challenges they face and their hopes for rare diseases research. Watch the videos.

Social Media

Follow @ncats_nih_gov(link is external) and @ORDR(link is external) on Twitter, and use #RDDNIH to join the conversation!

Rare Disease Day at NIH 2017

Rare Disease Day®(link is external) takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. Each year, NCATS and the NIH Clinical Center sponsor Rare Disease Day at NIH as part of this global observance. This year’s global theme is “Research(link is external),” and the slogan is “Research brings hope to people living with a rare disease.”

2017 Event Information

Rare Disease Day at NIH 2017
Monday, February 27
8:30 a.m. - 4:00 p.m.
Masur Auditorium, Building 10
National Institutes of Health
Bethesda, Maryland
Admission is free and open to the public in person or via webcast. In association with Global Genes®, participants are encouraged to wear their favorite pair of jeans. Be sure to follow the event on social media using #RDDNIH.
Featured Activities: NIH Clinical Center tours, posters, exhibits, art show and presentations

About Rare Disease Day

A young boy with plastic bronchitis.
EURORDIS(link is external) sponsored the first Rare Disease Day in Europe on Feb. 29, 2008. The United States joined the first global observance the following year along with 23 other countries. Visit Rare Disease Day USA(link is external) and International Rare Disease Day(link is external) for more information.

About Rare Disease Day at NIH

Each year since 2010, the slogan for NIH’s event has been “Patients & Researchers — Partners for Life.”  This slogan aligns with NCATS’ philosophy that researchers must work closely with patients, families, caregivers and advocacy groups to maximize the chances for success in advancing rare diseases research. This philosophy has been put into practice in NCATS’ Rare Diseases Clinical Research NetworkTherapeutics for Rare and Neglected Diseases program, and the Genetic and Rare Diseases Information Center, among other efforts.
The goals of Rare Disease Day at NIH are to:
  • Demonstrate and reiterate the NIH commitment to rare diseases research to help patients.
  • Highlight NIH-supported rare diseases research and the development of diagnostics and treatments.
  • Initiate a mutually beneficial dialogue among public and private researchers, patients, patient advocates, and policymakers.
  • Exchange the latest rare diseases information with stakeholders to advance research and therapeutic efforts.
  • Put a face on rare diseases by sharing stories of patients, their families and their communities.

NCATS and Rare Diseases Research

The Frase family
According to Orphanet(link is external), there are 6,000 to 7,000 rare diseases. Only a few hundred have any treatment. Although each rare disease affects fewer than 200,000 Americans, in total these illnesses affect an estimated 25 million people in the United States. Less than 5 percent of rare diseases have a treatment.
NCATS is all about getting more treatments to more patients more quickly. The Center tackles rare diseases research through collaborative projects to study the commonalities and underlying molecular causes of these disorders. This approach creates the potential to speed the development of treatments for a number of rare and common diseases at the same time.

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