Families with a rare genetic disorder will have a different experience than others during the COVID-19 emergency.
Scientists at UCLA worked directly with families to better understand specific challenges and when they occur by conducting a survey of parents with a child with a rare genetic disorder. Over 1000 families responded, providing valuable data on the challenges and needs of families during this difficult time. These results were published in the Journal of Intellectual Disability Research in September 2020.
For many families of children/adults with genetic syndromes associated with developmental disabilities, the impact of COVID-19 restrictions on access to educational and medical services continues and evolves. They would like to learn about the continued experiences of these families after many months of virtual learning and online therapeutics. The new survey is similar to the previous version. It will take 10-20 minutes to complete. The survey is intended both for individuals who completed the previous version as well as new participants.
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