Kennedy Krieger Institute Supports Rare Disease Day® and Joins Global Movement to Raise Important Awareness for Rare Diseases

Sowmya Nath,'s picture
February 27, 2015

BALTIMORE—February 27, 2015—Kennedy Krieger Institute has joined forces with rare disease patients and health care advocates in the U.S. and around the world for Rare Disease Day® on February 28. Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients and the community.

Kennedy Krieger Institute cares for patients and families affected by a wide breadth of rare diseases, including Albright hereditary osteodystrophy, adrenoleukodystrophy, Sturge-Weber Syndrome, spina bifida, Rett Syndrome, osteogenesis imperfecta and many others. The Institute is home to many of the nation’s experts on rare diseases, who are employing novel technologies and research to improve the lives of the children, adolescents and adults impacted by these conditions.

According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 people. Nearly 1 in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children. There are more than 7,000 rare diseases and only approximately 450 FDA-approved medical treatments.

NORD Rare Disease Day

Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face. It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe, and is now observed in more than 80 nations. Rare Disease Day is sponsored in the U.S. by the National Organization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to the identification, treatment, and cure of rare diseases.

For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.us. For information about global activities, go to www.rarediseaseday.org. To search for information about rare diseases, visit NORD’s website, www.rarediseases.org.

About Kennedy Krieger Institute

Internationally recognized for improving the lives of children and adolescents with disorders and injuries of the brain, spinal cord and musculoskeletal system, the Kennedy Krieger Institute in Baltimore, Md. serves more than 20,000 individuals each year through inpatient and outpatient clinics, home and community services and school-based programs. Kennedy Krieger provides a wide range of services for children with developmental concerns mild to severe, and is home to a team of investigators who are contributing to the understanding of how disorders develop while pioneering new interventions and earlier diagnosis. For more information on Kennedy Krieger Institute, visit kennedykrieger.org.

About NORD

Established in 1983, the National Organization for Rare Disorders (NORD) is the primary nonprofit organization representing all patients and families affected by rare diseases in the U.S. It provides programs of advocacy, education, research and patient/family services to improve the lives of all people living with rare diseases. NORD represents more than 200 disease-specific member organizations and partners with many other organizations in specific causes of importance to the rare disease patient community. Follow NORD at www.rarediseases.org and on Twitter at @RareDiseases.

Media contacts:

Jennifer Huron
NORD
Phone: 203-744-0100
Email: jhuron@rarediseases.org

Receive Updates

Stay informed with the latest news and announcements from Kennedy Krieger.

Publications

Read inspiring stories, news and updates about the Institute's patient care, research, special education, professional training, and community programs.

 

Resource Finder

 

A free resource that provides access to information and support for individuals and families living with developmental disabilities.