You all know and understand that getting researchers and pharmaceutical companies involved in finding a cure for a rare disorder is a gigantic task. For an ultra-rare disease this is doubly so difficult. One of the first critical steps to doing this is having a cohort of patients and carers for researchers and pharmaceutical companies to speak to.
www.curegsd1b.org is doing an incredible job of helping to create a contact list of all GSD1b globally to start this. They are collecting basic contact details and email addresses to join the Rare X data collection platform in February 2022. They currently have one of the most extensive contact lists of GSD1b’s.
They have created a short questionnaire using Google forms to help capture some very basic demographics and contact information. This data will not be shared with anyone outside the GSD1b community. The data will help with the initial rollout of the patient registry, and give a more effective way to communicate with the GSD1b community about events, research updates, etc. By filling out the form you will be added to the CureGSD1b organization.
GSD1b patients and the carers of people with GSD1b should register their details below.
To access the English version questionnaire directly from this link:
This questionnaire will take GSD1b patients and the carers of people with GSD1b less than one minute and help immensely set up the foundations for finding cures and helping GSD1b patients and carers. It will also be a great resource of information and support for GSD1b patients and carers.
More information about CureGSD1b can be found on their website:
The www.curegsd1b.org site is also available in 22 languages.
If you have any other questions or want to get involved more yourself, please email either Jamas LaFreniere email@example.com or Enrique L. Contreras Pulido firstname.lastname@example.org