En español | In Spanish NICHCY offers brief, but detailed fact sheets on specific disabilities. Each fact sheet defines the disability, describes its characteristics, offers tips for parents and teachers, and connects you with related information and organizations with special expertise in that disability. Don't see the disability you were looking for listed below? Try our suggestions page. _____________________ Attention-Deficit/Hyperactivity … [Read more...]
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PDFRare Disorders
February 2011 Alone we are rare. Together we are strong." Slogan of Rare Disease Day ---February 29, 2012. Roughly 7,000 rare diseases/disorders have been identified as affecting the human race. Because they are rare, it can be a real challenge for a person to be accurately diagnosed. Finding effective treatments, especially medicine, can also be a challenge---and for the same reason. Rareness. If you have a rare disease, know someone who … [Read more...]
Didn’t Find the Disability You Were Looking For?
If you didn't find the disability of your interest listed in our fact sheets or in IDEA's disability categories, don't give up quite yet. We have four specific suggestions! Look within IDEA's definitions Is it a rare disorder? Use the SEARCH box Contact us ________________________ Suggestion 1: Check the alphabetical list below to see if the disability is listed there. Many of IDEA's disability categories and definitions explicitly … [Read more...]
February 2011 | News You Can Use
February 2011IN THIS ISSUEThis Month from the National Dissemination CenterIt All Starts...in Families...and CommunitiesThe Little Ones: Early Intervention/Early ChildhoodSchools, K-12State & System ToolsSpecial Focus: Rare DisordersGreetings! Happy Day-After Groundhog's Day! Is spring just around the corner? Seems a bit hard to believe, no matter what the groundhog saw or didn't see. There are many great resources coming from OSEP's TA&D … [Read more...]
Understanding genetics
Understanding Genetics is a resource of the Genetic Alliance. It begins with a basic introduction to genetics concepts, followed by detailed information on topics such as diagnosis of genetic conditions, family history, newborn screening, genetic counseling, understanding patient stories, and ethical, legal, and social issues in genetics. http://www.geneticalliance.org/understanding.genetics … [Read more...]
Students Living With a Genetic Condition: A Guide for Parents
You know how to identify and manage symptoms at home, and it may be scary to have someone else manage your child’s medical care in your absence. This guide provides information that may be helpful when writing a letter or when preparing to meet with your student’s teacher, school nurse, and physical education teacher or coach. This may also be a useful resource for bus drivers, babysitters, church leaders, or any other potential caregiver. http://tinyurl.com/23neulr … [Read more...]
GINA–the law against genetic discrimination
With genetic testing becoming increasingly pervasive in medical care and our daily lives, three of the most prominent organizations in genetics (the Genetics and Public Policy Center at Johns Hopkins University, the National Coalition for Health Professional Education in Genetics, and Genetic Alliance) have teamed up to produce educational materials about the Genetic Information Nondiscrimination Act (GINA), a landmark federal law that protects individuals … [Read more...]
Tips for those with an undiagnosed condition
Despite years of investigation and struggle, many disabilities and disorders are not diagnosed. What is it? If you live with an undiagnosed condition, or know someone who does, this article may be helpful.http://rarediseases.info.nih.gov/GARD/TipsForAnUndiagnosedCondition.aspx … [Read more...]
SSA benefits and compassionate allowances
Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards.Compassionate allowances are a way of quickly identifying diseases and other medical conditions that invariably qualify under the "Listing of Impairments" based on minimal objective medical information. Compassionate allowances allow Social Security to quickly target the most … [Read more...]
