Selfstudy by Questionnaires and Scorecards
Nobody with Rubinstein-Taybi syndrome is the same! It is important to understand how healthy you are and who you are! Our community provides questionnaires and scorecards that help you to discover how Rubinstein-Taybi syndrome has impacted your life, how you develop.
When you discover which aspects of Rubinstein-Taybi syndrome impact your life, we will provide links to fitting information to allow you to develop your personal health system. This saves you from digesting information you do not need directly, keeping your head free, to allow you to enjoy life and give you just that little bit of extra support.
Because if there is something typical for families with a care-intensive person having Rubinstein-Taybi syndrome, is that you will see similarities with others having Rubinstein-Taybi syndrome, but that you will also see where you are special. Finding your friend that really matches your lifestyle, has dealt with the same challenges can be improved by finding these people with Rubinstein-Taybi syndrome that have approximately provided the same answers to our questionnaires and have similar scorecards.
Rubinstein-Taybi syndrome is a condition characterized by short stature, moderate to severe learning difficulties, distinctive facial features, and broad thumbs and first toes. It occurs in an estimated 1 in 125,000-300,000 births.
