Resource Library

We know that when you’re living with a chronic illness, the most powerful tool you have is information.

Whether you are newly diagnosed, have been a part of the Myhre community for some time or care for someone who is, we are here to help and support you. As a rare syndrome, information about Myhre Syndrome can be hard to find and trying to understand where to start can quickly become overwhelming.

When living with a chronic illness, information is power. The better information you have, the better able you will be to care for and advocate for yourself or your loved one. This is why we have created this section to provide our Myhre community with useful information, carefully vetted by our Professional Advisory Board. Here you will find information about the diagnosis, treatments and resources. We will regularly be updating and expanding our informational materials here so check back regularly.

The Myhre Syndrome Clinic at MassGeneral Hospital for Children is currently the only specialized clinic in the world, providing state-of-the-art care by an expert multidisciplinary team for people of all ages and their families who live with Myhre syndrome. As a subspecialty program, they do not offer routine primary care, but instead provide a comprehensive evaluation, specific to the needs of people with Myhre syndrome. Clinic doctors work with the patient’s primary care provider to identify specialty needs and to coordinate care and improve outcomes.

Click here to meet the MGH Myhre Clinic team.

Articles

We are working hard to provide you with the most up-to-date catalogue of articles and patient education materials about Myhre Syndrome. All articles and materials are carefully vetted by our Professional Advisory Board to ensure you are receiving the most accurate information you need to care for yourself or your loved one. Please note not all articles are available without a subscription fee, this applies worldwide.