The Children’s Hospital of Philadelphia is conducting a research study aimed at identifying needs among communities affected by rare disease, with the goal of closing the communication gaps between rare disease patients, families, and physicians.

Adult parents and adult patients living with a rare disease, including hereditary hemorrhagic telangiectasia (HHT), are invited to take part in an online survey.

The survey is completed from home and takes one sitting.

To learn more: write to research@curehht.org.