A Walk for a Worthy Cause
Recently, Inozyme participated in the GACI Global Worldwide Walk to raise money and awareness for families impacted by Generalized Arterial Calcification of Infancy (GACI) and Autosomal Recessive Hypophosphatemic Rickets Type 2 (ARHR2), ultra-rare conditions that impact just 1 out of every 200,000 people.
There are currently no treatment options for GACI or ARHR2 and the survival statistics of GACI are currently estimated to be around 50%. Additionally, many people struggle to obtain a diagnosis, with the length of time from symptom onset to proper diagnosis of a rare disease currently at 4.8 years.
With a mission to help address unmet needs in the GACI and ARHR2 communities, GACI Global continues to be an invaluable resource to patients and families impacted by GACI and ARHR2. Donations to this organization, including money raised through the Worldwide Walk, help GACI Global connect families to each other and medical professionals, provide current educational resources, and support ongoing research for better treatment options.
At Inozyme, we are incredibly proud and grateful to be GACI Global’s partner. They connect us with patients and families battling these conditions and help us build a bridge with the advocacy community. After all, our work means nothing if we do not have their support. We called our team for the Worldwide Walk “ENPPWon” because, with the support of organizations like GACI Global, and the bravery of patients and families, we are determined to improve the quality of life for those living with ENPP1 Deficiency and ABCC6 Deficiency – the diseases of abnormal mineralization associated with GACI.
To learn more about GACI Global visit their website here: https://gaciglobal.org/