In this issue, we cover well-known people with three types of connective tissue disorders: Loeys-Dietz syndrome, Marfan syndrome, and Ehlers-Danlos syndrome. We also discuss the importance of multidisciplinary care and remind investigators to apply for the LEAP Impact Award by March 22.
How can a celebrity with a connective tissue disorder impact you? When well-known people share their health struggles, it helps to normalize and raise awareness of different health conditions. For rare diseases, awareness is especially important and can help to:
- foster an early and correct diagnosis;
- save lives and improve care and quality of life;
- create a sense of community;
- incite policymakers to fund rare disease research and services.