(Atlanta, July 7 2018)
Today at the NPKUA Conference in Atlanta, Georgia, the Global Association for Phenylketonuria (GAP) was unveiled. Representatives from patient groups across four continents have been working towards this dream since it was first conceived of in Dublin, Ireland 2016.
Representative from Germany, Tobias Hagedorn stated, “I am proud and deeply humbled that it falls to me to publicly announce the foundation of the Global Association for Phenylketonuria as a charitable and independent patient organisation”.
GAP has been founded to bridge the gaps in care for PKU world-wide.
“Two-thirds of new born babies worldwide have no access to new born screening. That’s one baby every hour … I have a dream that one day all children will have access to newborn screening and early diagnosis, and access to adequate treatment. I have that dream!” Tobias continued. This dream is shared by all founders of GAP.
In addition to advocating for universal access to newborn screening and care, other GAP priorities include, mentoring like-minded patient associations offering best practices and support; increasing collaboration among PKU researchers, scientists, clinicians and patient groups, and ultimately working for a cure.
GAP will work to make PKU a global health priority, ensuring all people living with PKU, despite their origin, will be able to reach their full potential.
The founding trustees of GAP are John Adams (Canada), Deniz Atakay (Turkey), Cristian Baigorria (Canada), Christine Brown (United States of America), Monique Cooper (Australia), Tobias Hagedorn (Germany), Louise Healy (Australia), Eric Lange (England), Ronaldo Salles Lopes (Brazil), Jose Jesus Munoz (Mexico), Amy Oliver (United States of America), Alejandro Spataro (Argentina).
The GAP founding moral sponsors are national and regional PKU support groups from around the globe including Argentina, Australia, Brazil, Canada, Chile, Europe, Mexico, Turkey and the USA.