NATIONAL PKU ALLIANCE INC
Programs
PKU Community Conference
IN 2024, THE NPKUA HOSTED OUR BIENNIAL COMMUNITY CONFERENCE FROM JULY 16TH TO 19TH OUTSIDE OF WASHINGTON, DC. ATTENDEES INCLUDED 110 INDIVIDUALS WITH PKU, THEIR FAMILIES/CAREGIVERS, INDUSTRY PARTNERS, AND LEADING EXPERTS IN THE FIELD OF PKU RESEARCH, CLINICAL CARE, NUTRITION, AND ADVOCACY. IN TOTAL, WE WELCOMED 460 ATTENDEES FROM 12 COUNTRIES. ACROSS THREE DAYS WE HELD MEANINGFUL CONVERSATIONS THROUGH EDUCATIONAL PRESENTATIONS AND ACTIVITIES DISCUSSING RESEARCH, CLINICAL TRIALS, MENTAL HEALTH, DIET MANAGEMENT AND COMMUNITY ENGAGEMENT.GeographiesNot indicatedDatesJan 1, 2024 – Dec 31, 2024Source990No causes providedNo populations provided–$447.5KThe NPKUA Research Grants
THE NPKUA APPROVED 3 RESEARCH GRANTS FROM THE 2024 RESEARCH GRANT CYCLE FOR A TOTAL OF $470,432. THE RESEARCH PROJECTS FOCUS ON PKU ASSESSMENT TOOLS AS WELL AS PKU TREATMENTS AND THERAPIES THAT DRIVE PROGRESS TOWARDS A CURE. AS OF 2024, THE NPKUA HAS AWARDED $5,994,699 SUPPORTING OVER 80 RESEARCH PROJECTSGeographiesNot indicatedDatesJan 1, 2024 – Dec 31, 2024Source990No causes providedNo populations provided–$937KMultidisciplinary Science Conference
THE NPKUA HELD A MULTIDISCIPLINARY SCIENCE CONFERENCE IN 2024. THIS UNIQUE CONFERENCE INCLUDED 80 ACADEMIC RESEARCHERS, CLINICIANS, INDUSTRY PARTNERS IN A COLLABORATIVE FORUM TO FURTHER THE DEVELOPMENT OF TREATMENTS FOR PKU. THE KEYNOTE SPEAKER, FROM THE FDA, ADDRESSED NOVEL CLINICAL TRIAL DESIGNS USED IN THE APPROVAL PROCESS OF DRUGS FOR RARE DISEASES. SESSIONS AND DISCUSSIONS INCLUDED CLINICAL OUTCOME ASSESSMENT TOOLS, NEUROCOGNITIVE IMPACTS ON EXECUTIVE FUNCTION, RELEVANT CLINICAL OUTCOME USING AI, NEW METHOD TO ASSESS ANXIETY AND DEPRESSION, AND SYMPTOM SEVERITY AND IMPACT SCALE. FOCUS ALSO INCLUDED BRINGING ADULTS BACK TO CARE AND CHALLENGES FACED WITH THE DRUG APPROVAL PROCESS.GeographiesNot indicatedDatesJan 1, 2024 – Dec 31, 2024Source990No causes providedNo populations provided–$146.8K
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