New and improved website
The CureGSD1b website, which is funded and operated by Sophie’s Hope Foundation, has recently been relaunched.
The site is available in 22 languages and more can be added if needed.
The two most important pieces at the moment are highlighted on the home page. This is the family contact registry and the newly launched online patient registry that is called the “GSD1b Online Data Collection Program.”
Family Contact Registry
The family contact registry is a 1 min google form and is available in 6 languages. So far almost 200 patients have signed up. This is just a way to create an email list for communication purposes. It’s already been put to use trying to help fellow GSD1b’s that were stuck in Ukraine.
Online Collection Program
The “Online Data Collection Program” is a partnership with RARE-X and takes about an hour to enroll and fill out the surveys. They will help to develop treatments faster and improve GSD1b care. RARE-X is only available in English at the moment. Spanish should be available by the end of the year and all major languages will follow.