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 Glycogen Storage Disease Type IV (GSD IV) patients diagnosed worldwide — ~200 with adult-onset form or Adult Polyglucosan Body Disease (APBD) and ~146 with early-onset form (in utero, infantile, pediatric, and adolescent) — 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, patients across the GSD IV continuum appear to be significantly misdiagnosed, underdiagnosed, or underrepresented in our community.
To advance the science and make treatment options a reality, the APBD Research Foundation believes it is imperative to build bridges across the GSD IV community.
Clinical Practice Guideline (Molecular Genetics and Metabolism)
Global Prevalence Study (Journal of Inherited Metabolic Disease Reports)
#Findthe34000 Flyer - for healthcare professionals (APBD Research Foundation)
#Findthe34000 Flyer - for patients and family members (APBD Research Foundation)
We are working on translating the flyers into several languages to increase access. Stay tuned!
Have you connected with the APBD Research Foundation?
Are you a patient with GSD IV — including early-onset GSD IV or adult-onset GSD IV (APBD)? Are you on a diagnostic journey to understand your symptoms? Are you a clinician that is working with or caring for GSD IV patients?
Make sure that you are being counted as part of the APBD Research Foundation community!