Related Experiment Videos
Rett syndrome: parents' views about specific symptoms
1International Rett Syndrome Association, Fort Washington, Maryland 20744.
Brain & Development
|January 1, 1987
Summary
The International Rett Syndrome Association (IRSA) was founded to support families affected by Rett syndrome. IRSA aims to collect information, encourage research, and aid in the identification, treatment, and prevention of this rare neurological disorder.
Area of Science:
- Neurology
- Genetics
- Pediatrics
Background:
- Rett syndrome is a rare, devastating neurodevelopmental disorder affecting families lifelong.
- Diagnosis can be a long and arduous process for parents seeking answers.
- The International Rett Syndrome Association (IRSA) was established to address these challenges.
Purpose of the Study:
- To establish a support network for parents of children diagnosed with Rett syndrome.
- To facilitate early diagnosis and identification of individuals with Rett syndrome.
- To outline the foundational aims of the IRSA in advancing Rett syndrome research and care.
Main Methods:
- Founding of the International Rett Syndrome Association (IRSA) in 1984.
- Convening of a conference with the John F. Kennedy Institute for Handicapped Children in 1985 for diagnosis confirmation.
- Sponsorship of a second international expert conference and parent gathering in 1985.
Main Results:
- Confirmed diagnosis of 39 girls with Rett syndrome at the 1985 conference.
- Brought together 70 affected girls and their families with 116 international experts.
- Established clear objectives for the IRSA regarding information dissemination, research, identification, and prevention.
Conclusions:
- The IRSA was instrumental in consolidating efforts for Rett syndrome research and support.
- Early gatherings facilitated diagnosis and fostered a community for affected families.
- The organization's aims provide a framework for addressing the complexities of Rett syndrome.