Progressive Familial Intrahepatic Cholestasis Advocacy And Resource

TO IMPROVE THE LIVES OF PATIENTS AND FAMILIES WORLDWIDE AFFECTED BY PROGRESSIVE FAMILIAL INTRAHEPATIC CHOLESTASIS, PFIC.

IN 2023, PFIC NETWORK PROVIDED PROGRAM SERVICES IN THE AREAS OF PEER SUPPORT, EDUCATION, OUTREACH, ADVOCACY AND RESEARCH TO FURTHER OUR MISSION OF IMPROVING THE LIVES OF PATIENTS AND FAMILIES AFFECTED BY PFIC WORLDWIDE. OUR PEER SUPPORT AND EDUCATION PROGRAMS IN 2023 HAD A STRONG EMPHASIS ON MENTAL HEALTH. WE OFFERED A MULTI-PART WEBINAR SERIES ADDRESSING PRURITUS MANAGEMENT THROUGH A PSYCHOLOGY AND MENTAL HEALTH LENS, TAKING A UNIQUE APPROACH TO ONE OF THE MOST DISTRESSING AND DIFFICULT TO MANAGE PFIC SYMPTOMS. WE ALSO CONTINUED TO OFFER ZOOM SUPPORT GROUPS, 1:1 COACHING SESSIONS, FINANCIAL ASSISTANCE AND CARE PACKAGES TO PFIC PATIENTS AND FAMILIES IN NEED. A MAJOR INITIATIVE FOR OUR ADVOCACY PROGRAM WAS FUNDING TWO ROUNDS OF OUR GLOBAL AFFILIATE SCHOLARSHIP. WE FUNDED SEVERAL INTERNATIONAL ADVOCATES TO ATTEND A PFIC MEETUP WE HOSTED WITH RESEARCHERS AND CLINICIANS AT THE EUROPEAN SOCIETY FOR PAEDIATRIC GASTROENTEROLOGY HEPATOLOGY AND NUTRITION (ESPGHAN) ANNUAL MEETING AND WE SUPPORTED A NEW PFIC ADVOCACY GROUP BASED IN AUSTRALIA TO PURSUE OFFICIAL CHARITY REGISTRATION. IN MAY, WE HOSTED OUR LARGEST PFIC FAMILY AND SCIENTIFIC CONFERENCE YET, WITH OVER 100 PEOPLE ATTENDING IN PERSON AND 60+ ATTENDING VIRTUALLY. THE CONFERENCE BRINGS PFIC RESEARCHERS, CLINICIANS AND INDUSTRY STAKEHOLDERS TOGETHER WITH PFIC PATIENTS AND FAMILIES TO DISCUSS UNMET NEEDS OF THE PATIENT COMMUNITY AND TO PROVIDE UPDATES ABOUT ONGOING PFIC RESEARCH. ONE OF OUR BIGGEST RESEARCH INITIATIVES FOR THE YEAR WAS THE LAUNCH OF PROJECT IMPACT (IDENTIFYING RESEARCH TARGETS BY MERGING PATIENT AND CLINICIAN TREATMENT INFORMATION). THE GOAL OF THE PROJECT IS TO PREPARE THE PFIC COMMUNITY FOR PATIENT-CENTERED OUTCOMES RESEARCH. THIS TWO YEAR PROJECT WILL RUN FROM JULY 2023-JULY 2025 AND IS FUNDED THROUGH A PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE (PCORI) EUGENE WASHINGTON ENGAGEMENT AWARD (EASO-30455). OUR PATIENT REGISTRY, WHICH WE RELAUNCHED ON THE REDCAP PLATFORM LAST YEAR, WAS FULLY TRANSLATED INTO ITALIAN, SPANISH AND POLISH THIS YEAR, ALLOWING US TO COLLECT DATA FROM NON-ENGLISH SPEAKING PATIENTS FOR THE FIRST TIME. WE ALSO OPENED AN APPLICATION PERIOD FOR ANOTHER ROUND OF OUR $30K SMALL GRANT PROGRAM FUNDING PFIC RESEARCH. APPLICATIONS WILL BE ACCEPTED UNTIL EARLY 2024.