Rare Disease Day at NIH
Rare Disease Day at NIH Registration Site
On February 27, 2015, the National Institutes of Health (NIH) celebrated the eighth annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by NCATS’ Office of Rare Diseases Research, the NIH Clinical Center, other NIH Institutes and Centers; the Food and Drug Administration’s Office of Orphan Product Development; other Federal Government agencies; the National Organization for Rare Disorders; the Genetic Alliance; Global Genes; and Uplifting Athletes. Rare Disease Day at NIH was held in the Masur Auditorium (Building 10) from 8:30 a.m. to 5:00 p.m. on Friday. Attendance was free and open to the public.
In addition to the various scheduled talks (see agenda), there were Clinical Center Tours and posters and exhibits from many groups relevant to the rare diseases research community displayed. In association with the Global Genes, we again encouraged all attendees to wear their favorite pair of jeans.
Watch the Web cast of NIH Rare Disease Day 2015 if you were unable to attend the event in person on February 27, 2015.
About Rare Disease Day
Rare Disease Day was established to raise awareness with the public about rare diseases, the challenges encountered by those affected, the importance of research to develop diagnostics and treatments, and the impact of these diseases on patients' lives. The focus of Rare Disease Day 2010 was 'Patients and Researchers, Partners for Life!' and is aligned with ORDR's philosophy that researchers need to work closely with patients and patient advocacy groups to maximize chances for success. This philosophy has been put into practice in our very successful Rare Diseases Clinical Research Network.There are about 7000 rare diseases identified in the United States. About 80 percent of rare diseases are genetic in origin and it is estimated that about half of all rare diseases affect children. Rare diseases can be chronic, progressive, debilitating, disabling, severe and life-threatening. Information is often scarce and research is usually insufficient. People affected face challenges such as delays in obtaining a diagnosis, misdiagnosis, psychological burden and lack of support services for the patient and family. The goals remain for rare disease patients to obtain the highest attainable standard of health and to be provided the resources required to overcome common obstacles in their lives.
Rare Disease Day is celebrated around the world to raise awareness among decision-makers as well as the general public regarding rare diseases and their impact on patients’ lives. The NIH celebrates Rare Disease Day to:
- Demonstrate and reiterate the NIH commitment to rare diseases research to help patients
- Highlight rare diseases research, and the development of diagnostics and treatments, being funded and conducted across NIH
- Initiate a mutually beneficial dialogue among public and private researchers, patients, patient advocates and policy makers
- 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
The first Rare Disease Day sponsored by EURORDIS was held in Europe on February 29, 2008. February 29th was chosen since it is a rare day and it is symbolic of rare diseases. 2009 was the first time that Rare Disease Day was observed in the U.S. In addition to 17 European countries participating in Rare Disease Day 2009, the United States was joined by Argentina, Australia, Canada, China, Colombia, and Taiwan in celebrating the first global Rare Disease Day.
National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD), a leading independent, non-profit organization committed to the identification, treatment, and cure of rare disorders, serves as the sponsor of Rare Disease Day in the United States, working with EURORDIS and other national sponsors around the world. NORD hosts the official Rare Disease Day U.S. website, where it provides resources such as press kits, customizable press releases, official logos, videos and social media badges, and suggested activities with supporting materials for organizations, schools or universities, companies, and individuals. The website lists events taking place across the U.S. for Rare Disease Day. The public is invited to submit events to be listed.
As part of Rare Disease Day, NORD helps to organize state-wide awareness events across the U.S. The events take place at State Houses and are intended to inform and educate legislators on the challenges and needs of rare disease patients. There is growing interest in this area, with 30 State House events planned for 2015. Rare disease patients and others in the rare disease community are invited to share their personal stories and photos through the Rare Disease Day Handprints Across America™ campaign. All submissions will be featured on the Rare Disease Day U.S. website and on social media. Follow Rare Disease Day on Facebook and Twitter and join the conversation using the hashtags #RDD2015 and #RareDiseaseDay.
For more information, visit http://rarediseaseday.us/.
Global Genes is a leading rare and genetic disease patient advocacy organization led by Team RARE (Rare advocacy, Awareness, Research, Education) and promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes RibbonTM.
What began as a grassroots movement in 2009 to use the simple concept of "jeans and genes" to increase awareness for rare and genetic disorders has grown to over 400 global organizations. Their mission is centered on increasing rare disease awareness, public and physician education, building community through social media and supporting research initiatives to find treatments and cures for rare and genetic diseases.
Global Genes organizes a Wear That You CareTM awareness campaign on World Rare Disease Day where supporters wear the Genes RibbonTM and their favorite pair of jeans to show support for people fighting rare and genetic diseases. They encourage patients and family advocates to share their stories through social media via creative photo campaigns and blog articles. In 2013, the organization will launch a Twitter campaign with the hashtags #careaboutrare and #wearthatyoucare.
For more information on how to receive Blue Denim Genes RibbonsTM and how to participate in the Wear That You CareTM campaign, visit http://globalgenes.org/world-rare-disease-day/.