Will You Help Us #Findthe34000?
What is #FindThe34000?
#Findthe34000 is an awareness-building campaign aimed at identifying, connecting, and uniting the entire GSD IV patient community and the healthcare professionals who care for them.
Addressing the gap between the ~346 (~200 with adult-onset form or APBD and ~146 with early-onset form) GSD IV patients diagnosed worldwide and the new prevalence study's 34,000+ estimate for all individuals with GSD IV is important as the APBD Research Foundation builds strength and power in numbers. Given patient reports of their lengthy diagnostic odysseys and multiple misdiagnoses, we assert that both groups of patients are likely underdiagnosed.
To advance the science and make treatment options a reality, the APBD Research Foundation believes it is imperative to build bridges between the APBD and GSD IV communities.
Clinical Practice Guideline (Molecular Genetics and Metabolism)
Global Prevalence Study (Journal of Inherited Metabolic Disease Reports)
#Findthe34000 Flyer - for healthcare professionals (APBD Research Foundation)
Have you connected with the APBD Research Foundation?
Are you a patient with APBD or early-onset GSD IV? Are you on a diagnostic journey to understand your symptoms? Are you a clinician that has worked with patients with APBD or GSD IV?
Make sure that you are being counted as part of the APBD Research Foundation community!