Join us for the first in-person Myhre family conference in Philadelphia on July 27 and 28, 2024. We will have talks with Myhre experts, creative fun for children and young adults, one-to-one time with Myhre doctors, a fun-filled dinner, and family activity. Book your tickets today.

Your, or your child’s, Myhre journey is incredibly important to us. Not only do we want you to get access to the best care but we also want to find treatments and a cure. Can you help us by sharing your data and story with us? Find out more here.

We are pleased to announce that the Massachusetts General Hospital (MGH) in Boston, home to the Myhre Syndrome Clinic, has been awarded $24,227 to fund part of the yearly salary for a Clinical Research Coordinator (CRC).

The Clinical Research Coordinator (CRC) plays a pivotal role within the clinic team, engaging in various tasks crucial for advancing Myhre syndrome research and clinical understanding.

Responsibilities encompass collecting and analyzing patient data, designing research studies based on clinic data, recruiting patients for research initiatives, submitting research protocols, and facilitating data preparation. The CRC also serves as a liaison for patients at global Myhre events, collects biological samples during patient encounters, and ensures their safe transport to laboratories. Additionally, they contribute to Myhre syndrome mouse model research by undertaking tasks such as genotyping, data organization, maintaining laboratory records, and conducting animal phenotyping.