Family Surveys from Partner Organizations

In the rare disease space, there are often so many surveys circulating for our families to complete to help with research initiatives. These surveys are important for learning more about rare disease and the impact it can have on our families.

We understand that survey fatigue is real but that families may still want to help. In an effort to not overwhelm our families with survey requests via email, we are housing our partner’s surveys on this page. If you want to participate, please select a survey that interests you from the options below.

Note: these surveys were not created by or associated with TESS Research Foundation.

Current Surveys