Disability Etiquette

Introduction The United States Census Bureau reports that approximately 56.7 million Americans have a disability. This report is for anyone—with or without a disability—who wants to interact more effectively with people with disabilities. The Americans with Disabilities Act of 1990 was conceived with the goal of integrating people with disabilities into all aspects of life, particularly the workplace and the marketplace. Sensitivity toward people with disabilities is not only in the spirit of the ADA, […]

NORD’s RareEDU™ Launches Video Addressing a Topic Vital to Today’s Rare Disease Community, Gene Therapy: Your Questions Answered

Washington, D.C., July 19, 2018—The National Organization for Rare Disorders (NORD) today launched Gene Therapy: Your Questions Answered, a new video from its RareEDU educational program addressing some of the most commonly asked questions from patients and caregivers on the topic.  It is available for viewing here. “For 35 years, providing information and education to the rare disease community has been an integral part of our mission at NORD. Through RareEDU, we provide educational resources for patients and […]

Study Finds Facial Analysis Software Able to Identify Patients with Williams-Beuren Syndrome

A new study has shown that researchers have successfully used facial analysis technology and clinical information to successfully identify patients with Williams-Beuren syndrome, a rare condition that causes cardiovascular problems and intellectual disability. Though Williams-Beuren syndrome is a genetic condition, most case are not inherited. It affects about 1 in 7,500 to 10,000 people. People with the condition have distinctive facial features including puffiness around the eyes, a short nose with a broad tip, full […]

Endrew F. Supreme Court Case: Strengthening The Voices Of Families At IEP Meetings

Many parents have had an experience similar to the one faced by Endrew F.’s parents, in which their child’s IEP goals don’t vary each year and there is lack of progress. BY DIANA AUTIN, MARIA DOCHERTY AND LAUREN AGORATUS, M.A. The recent Supreme Court case, Endrew F. vs. Douglas County School District, has implications for parents participating in the IEP (Individualized Education Program) development for their child. The decision clarifies the rights of children with […]

The Sacrifices Rare Disease Caregivers Make: National Alliance for Caregiving

First-of-its-Kind Study Looks at the Impact of Rare Disease on Family Caregivers Caregivers and Families Face Life-Altering Challenges: Support Services Rarely Used (Washington, D.C. Feb. 28) Findings from a first-of-its-kind national snapshot of caregivers of individuals with a rare disease or condition paint a picture of friends and families facing emotional, financial, physical, and social strain with little support from outside resources. The National Alliance for Caregiving, in partnership with Global Genes, released findings of an online study […]