Connect With Others About GSD

We know that living with a rare disease can be very lonely experience. It is so hard find others who understand what your life is like. Here are three ways to connect with others about Glycogen Storage Diseases:

Join us on Facebook: https://www.facebook.com/#!/AGSDus?fref=ts

GSD Life is a public discussion website for families, friends, doctors, and anyone else that is interested in learning about Glycogen Storage Disease and how it impacts the lives of those that have the disease.

http://gsdlife.ning.com/

Alexa Bream, a first year genetic counseling student at UTHealth, is conducting a survey to examine the relationship between metabolic control, body image, and quality of life in individuals with GSD type 1a. The survey is available for parents of children with GSD1a, as well as adults who have a diagnosis of GSD1a. No identifiable information will be collected and all responses will be confidential. To participate, click here.
For more information please contact Alexa Bream at: alexa.bream@uth.tmc.edu

Jennifer Peck, a graduate student at the University of Pittsburgh has developed a questionnaire to learn more about caregiver experiences involving GSD I. To participate, click here.
If you have questions or concerns about this research study, contact her at: jennifer.peck@pitt.edu
If you are still interested in participating or completing an unfinished survey, the survey will close April 30