The Naspghan Foundation

FUNDS & SUPPORTS RESEARCH AND EDUCATION MISSIONS OF NASPGHAN.

GRANTS AND AWARDS:[1] NASPGHAN/NASPGHAN FOUNDATION GEORGE FERRY YOUNG INVESTIGATORDEVELOPMENT AWARD:- THIS TWO-YEAR GRANT IS AVAILABLE TO JUNIOR FACULTY TO SUPPORTRESEARCH ACTIVITIES THAT HAVE THE POTENTIAL FOR EVOLUTION TO ANINDEPENDENT RESEARCH CAREER IN PEDIATRIC GASTROENTEROLOGY, HEPATOLOGYOR NUTRITION. MONIES ARE AWARDED IN SUPPORT OF A MERITORIOUS RESEARCHPROJECT IN THE CLINICAL OR BASIC SCIENCES TO STUDY THE DISEASES OF THEGASTROINTESTINAL TRACT, LIVER OR PANCREAS AND NUTRITIONAL DISORDERS INCHILDREN.SEE SCHEDULE O FOR CONTINUATIONS[2] NASPGHAN FOUNDATION/NESTLE NUTRITION RESEARCH YOUNG INVESTIGATORDEVELOPMENT AWARD:- THIS TWO-YEAR GRANT IS AVAILABLE TO JUNIOR FACULTY TO SUPPORTRESEARCH ACTIVITIES THAT HAVE THE POTENTIAL FOR EVOLUTION TO ANINDEPENDENT RESEARCH CAREER IN PEDIATRIC GASTROENTEROLOGY, HEPATOLOGYOR NUTRITION. THIS GRANT, GENEROUSLY SUPPORTED BY NESTLE NUTRITIONINSTITUTE, IS AWARDED TO SUPPORT MERITORIOUS BASIC OR CLINICAL RESEARCHPROJECT RELATING TO NUTRITION IN INFANCY, CHILDHOOD OR ADOLESCENCE.[3] NASPGHAN FOUNDATION/TAKEDA PHARMACEUTICALS NORTH AMERICA INCRESEARCH INNOVATION AWARD:- THIS GRANT IS OFFERED IN ODD NUMBERED YEARS. THIS GRANT WILL PROVIDE$75,000 ANNUALLY FOR TWO YEARS (TOTAL $150,000) FOR INNOVATIVE,HIGH-IMPACT RESEARCH IN PEDIATRIC GASTROENTEROLOGY, HEPATOLOGY ANDNUTRITION. THE INTENT OF THIS RESEARCH AWARD IS TO STIMULATESCIENTIFIC INQUIRY IN AN AREA THAT IS EXCEPTIONALLY INNOVATIVE AND HASTHE POTENTIAL TO IMPACT THE FIELD IN A HIGHLY NOVEL MANNER. APPLICANTSAT ANY CAREER LEVEL MAY APPLY.[4] NASPGHAN FOUNDATION/ASTRAZENECA RESEARCH IN PEPTIC ULCER DISEASES:- THIS GRANT WILL PROVIDE $75,000 ANNUALLY FOR TWO YEARS (TOTAL$150,000) FOR STUDIES FOCUSED ON THE EPIDEMIOLOGY, PATHOGENESIS,NATURAL HISTORY, GENETICS, DIAGNOSIS AND MANAGEMENT OF PEPTIC DISORDERSAND OTHER DISEASES OF THE UPPER GASTROINTESTINAL TRACT IN CHILDREN.DISEASES THAT ARE RELEVANT TO THIS ANNOUNCEMENT INCLUDE, BUT ARE NOTLIMITED TO GASTROESOPHAGEAL REFLUX, REFLUX ESOPHAGITIS, EOSINOPHILIC(ALLERGIC) ESOPHAGITIS, MOTILITY DISORDERS OF THE UPPERGASTROINTESTINAL TRACT, HELICOBACTER PYLORI INFECTION WITH OR WITHOUTULCERATION, NON-ULCER DYSPEPSIA, AND NON-BACTERIAL ULCER DISEASES.APPLICANTS AT ANY CAREER LEVEL MAY APPLY.[5] NASPGHAN FOUNDATION MID-LEVEL CAREER DEVELOPMENT AWARD - THISMID-LEVEL CAREER DEVELOPMENT AWARD IS FOR NASPGHAN MEMBERS PURSUINGRESEARCH IN PEDIATRIC GASTROENTEROLOGY, HEPATOLOGY AND NUTRITION ANDARE AT A MID-LEVEL IN THEIR CAREER. MID-LEVEL IS DEFINED AS A FACULTYMEMBER WHO HAS HELD A FACULTY APPOINTMENT FOR AT LEAST 6 YEARS AT THETIME OF THE APPLICATION, BUT HAS NOT YET REACHED PROFESSOR LEVEL. THISAWARD WILL PROVIDE UP TO $100,000 IN DIRECT FUNDING FOR 2 YEARS($50,000 PER YEAR) FOR THE ADVANCEMENT OF RESEARCH CAREERS FORAPPLICANTS WITH SIGNIFICANT PROMISE IN THEIR MID-YEARS AS FACULTY. THEPROPOSAL MUST INCLUDE A FOCUSED AREA OF RESEARCH THAT WILL DIRECTLYENHANCE THE APPLICANT'S ABILITY TO ACHIEVE FURTHER NATIONALPEER-REVIEWED RESEARCH FUNDING AND RESULT IN SIGNIFICANT IMPACT ONGASTROINTESTINAL, NUTRITION AND LIVER HEALTH IN CHILDREN. BASIC,CLINICAL, TRANSLATIONAL, EPIDEMIOLOGIC, DISSEMINATION ANDIMPLEMENTATION RESEARCH ARE ALL ENCOURAGED. THIS AWARD IS TO FOSTEREITHER A NEW AREA OF ENQUIRY OR TO PROVIDE PILOT DATA IN AN ONGOINGAREA OF RESEARCH WITH SUBSTANTIAL POTENTIAL FOR NEW FUNDING.[6] NASPGHAN FOUNDATION/APGNN SUSAN MOYER NURSING RESEARCH GRANT - THISONE-YEAR GRANT IS AVAILABLE TO PEDIATRIC GASTROENTEROLOGY, NUTRITIONAND HEPATOLOGY NURSES TO SUPPORT RESEARCH ACTIVITIES THAT HAVE THEPOTENTIAL TO ADVANCE NURSING CARE OF PATIENTS AND FAMILIES OF CHILDRENWITH GASTROINTESTINAL, HEPATOBILIARY, PANCREATIC OR NUTRITIONALDISORDERS. MONIES ARE AWARDED IN SUPPORT OF A MERITORIOUS RESEARCHPROJECTS TO STUDY THE NURSING CARE OF FAMILIES AND CHILDREN WITHPEDIATRIC GASTROINTESTINAL, HEPATOBILIARY, PANCREATIC OR NUTRITIONALDISORDERS.[7] NASPGHAN FOUNDATION/ABBOTT NUTRITION ADVANCED FELLOWSHIP TRAININGIN PEDIATRIC NUTRITION - THE AWARD IS EXPECTED TO BEGIN ON JULY 1 OFEACH ACADEMIC TERM ALTHOUGH ALTERNATE START DATES WILL BE CONSIDERED TOACCOMMODATE NON-TRADITIONAL ACADEMIC SCHEDULES. PEDIATRIC NUTRITION ISONE OF THE FASTEST GROWING AREAS OF SCIENTIFIC AND CLINICAL IMPORTANCETO CHILD AND POPULATION HEALTH. TO ADDRESS THIS GROWING INTEREST ANDTO ACCELERATE THE TRAINING OF PEDIATRIC EXPERTS, THE NASPGHANFOUNDATION HAS PARTNERED WITH ABBOTT NUTRITION TO DEVELOP A PATHWAY FORADVANCED FELLOWSHIP TRAINING IN PEDIATRIC NUTRITION.THE NASPGHAN FOUNDATION/ABBOTT NUTRITION ADVANCED FELLOWSHIP INNUTRITION WILL PROVIDE UP TO $75,000 IN DIRECT FUNDING TO SUPPORT ONEYEAR OF ADVANCED TRAINING IN PEDIATRIC NUTRITION FOR A NASPGHAN MEMBER.APPLICANTS ARE EXPECTED TO IDENTIFY A MENTOR AND A HOST NUTRITIONRESEARCH PROGRAM PRIOR TO APPLICATION FOR FUNDING. THE FELLOWSHIP MUSTINCLUDE A WELL-DEFINED CLINICAL EXPERIENCE AS WELL AS A FOCUSEDRESEARCH PROJECT. EXAMPLES OF AREAS FOR EMPHASIS INCLUDE BUT ARE NOTLIMITED TO: FETAL GROWTH AND NEONATAL NUTRITION, TYPICAL DEVELOPMENT OFFEEDING SKILLS/BEHAVIORS AND FEEDING DISORDERS; NUTRITIONAL ASPECTS OFEATING DISORDERS SUCH AS ANOREXIA NERVOSA AND BULIMIA; MALNUTRITION ANDFAILURE TO THRIVE; NUTRITION EDUCATION; NUTRITION IN SPECIFIC SYSTEMICDISEASES OR CLINICAL STATES SUCH AS CYSTIC FIBROSIS, LIVER DISEASE,INTESTINAL FAILURE, AND ORGAN TRANSPLANTATION; NUTRITION SUPPORT;COMMUNITY NUTRITION; NUTRITION EPIDEMIOLOGY; ENERGY HOMEOSTASIS;NUTRITION AND THE MICROBIOME; MICRONUTRIENT HOMEOSTASIS; NUTRIGENOMICS;OBESITY; BREAST MILK AND BREAST FEEDING; AND BASIC LABORATORYNUTRITIONAL SCIENCE. THE PRIMARY OBJECTIVE OF THE FELLOWSHIP IS TOCATALYZE AND INCREASE THE NUMBER OF HIGHLY-TRAINED, EXPERT NUTRITIONCLINICIANS, EDUCATORS AND SCIENTISTS AMONG THE MEMBERSHIP OF NASPGHAN,AS A MEANS TO IMPROVE SERVICE TO OUR PATIENTS AND THE PUBLIC.[8] NASPGHAN FOUNDATION INNOVATIONS IN CLINICAL CARE GRANT - THE AIM OFTHIS GRANT IS TO ENCOURAGE AND SUPPORT THE DEVELOPMENT OF INNOVATIVEAPPROACHES TO OPTIMIZE THE QUALITY OF CARE AND HEALTH CARE DELIVERY TOCHILDREN WITH DIGESTIVE DISEASES BY THE CLINICALLY FOCUSED PEDIATRICGASTROENTEROLOGIST. THE FOUNDATION WILL AWARD UP TO TWO GRANTS, EACHRANGING FROM $2,000 TO $5,000 FOR A ONE-YEAR PERIOD. SELECTION CRITERIAINCLUDE POTENTIAL IMPACT OF THE PROJECT ON PATIENT CARE AND THEAPPLICABILITY OF THE PROJECT TO THE GENERAL NASPGHAN COMMUNITY.CLINICALLY ORIENTED PHYSICIANS ARE STRONGLY ENCOURAGED TO APPLY.[9] NASPGHAN FOUNDATION/QOL RESEARCH AWARD FOR THE STUDY OF DISORDERSASSOCIATED WITH CARBOHYDRATE MALABSORPTION - THIS AWARD WILL PROVIDE$75,000 ANNUALY FOR TWO YEARS (TOTAL $150,000) FOR STUDIES FOCUSED ONDISORDERS OF CARBOHYDRATE (CHO) MALDIGESTION/MALABSORPTION IN CHILDREN.RELEVANT CONDITIONS INCLUDE, BUT ARE NOT LIMITED TO LACTOSEINTOLERANCE, CONGENITAL SUCROSE-ISOMALTASE DEFICIENCY, DISEASES LEADINGTO INTESTINAL EPITHELIAL CELL DYSFUNCTION, SIBO, OR INFLAMMATORYCONDITIONS AFFECTING CHO ABSORPTION. APPLICANTS AT ANY CAREER LEVEL MAYAPPLY.[10] NASPGHAN FOUNDATION/CPNP NUTRITION RESEARCH GRANT - THIS ONE-YEARGRANT IS AVAILABLE TO PEDIATRIC DIETITIANS TO SUPPORT RESEARCHACTIVITIES THAT HAVE THE POTENTIAL TO ADVANCE THE NUTRITION CARE OFPATIENTS AND FAMILIES OF CHILDREN WITH NUTRITIONAL DISORDERS. THENASPGHAN FOUNDATION WILL AWARD GRANTS RANGING FROM $500 TO $5,000 FORONE YEAR.

EDUCATIONAL CAMPAIGNS:THE FOUNDATION SUPPORTS THE EDUCATIONAL MISSION OF NASPGHAN THROUGH ADIVERSE PORTFOLIO OF PROFESSIONAL AND PUBLIC EDUCATION INITIATIVES.TOPIC AREAS ARE REFLUX AND GERD, INFLAMMATORY BOWEL DISEASE, CELIACDISEASE AND GLUTEN-RELATED DISORDERS, CONSTIPATION, EOSINOPHILICESOPHAGITIS, NUTRITION, ENDOSCOPY, AND NONALCOHOLIC FATTY LIVER DISEASEIN CHILDREN, ADOLESCENTS AND YOUNG ADULTS. THE FOUNDATION'S GOAL IS TOEDUCATE MEDICAL PROFESSIONALS AND THE PUBLIC, AND TO SUPPORT THEDEVELOPMENT OF NEW RESEARCH IN THESE AREAS. THE PRIMARY OBJECTIVES ARETO IMPROVE THE QUALITY OF LIFE AND TO CHANGE PEDIATRIC AND ADULT HEALTHOUTCOMES BY EARLY DETECTION AND INTERVENTION.GIKIDS IS THE PATIENT OUTREACH AND EDUCATION EFFORT OF NASPGHAN. WITHGIKIDS, NASPGHAN AND THE FOUNDATION ARE WORKING TO REACH OUT DIRECTLYTO FAMILIES, KIDS AND TEENS WHO LIVE WITH DIGESTIVE CONDITIONS TOPROVIDE THEM WITH THE INFORMATION THEY NEED TO:-UNDERSTAND AND IMPROVE THEIR DIGESTIVE HEALTH-WORK WITH THEIR HEALTH CARE PROVIDERS-LIVE A MORE INDEPENDENT LIFE-UNDERSTAND WHAT WORKS IN PLAIN LANGUAGE"EOSINOPHILIC GI DISEASES: BEYOND THE ESOPHAGUS" WEBINAR AND ON DEMAND CME/MOC PROGRAMEOSINOPHILIC GASTRITIS (EG), GASTROENTERITIS (EGE) OR COLITIS (EC) ARE RARE DISEASES WITH VERY LITTLE KNOWN ABOUT EVEN THE MOST FUNDAMENTAL ASPECTS OF THE DISEASES. GIVEN THE DIFFICULTY IN RECOGNIZING THESE CONDITIONS AND THE GAPS IN OUR KNOWLEDGE, A WEBINAR PRESENTATION LED BY EXPERTS IN THE FIELD OF EGIDS IS TIMELY AND INFORMATIVE. TO FULFILL THESE MEDICAL PROFESSIONAL EDUCATIONAL NEEDS AND GAPS, NASPGHAN AND THE NASPGHAN FOUNDATION DEVELOPED A CME/MOC WEBINAR ON "EOSINOPHILIC GI DISEASES: BEYOND THE ESOPHAGUS". LEARNING OBJECTIVES:1.UNDERSTAND THE SIGNS AND SYMPTOMS OF EGIDS2.DEFINE THE CURRENT STATE OF THE BEST PRACTICES FOR THE DIAGNOSIS OF EGIDS3.UNDERSTAND THE PROPOSED MECHANISMS OF DISEASE4.DEFINE THE STATE OF THE ART FOR TREATMENT"A PRACTICAL APPROACH TO NUTRITIONAL MANAGEMENT OF CHILDREN WITH CHOLESTATIC LIVER DISEASES: TIPS FOR PATIENTS AND CAREGIVERS" WEBINAR AND ON DEMAND PROGRAMCHILDREN WITH CHOLESTATIC LIVER DISEASES HAVE UNIQUE NUTRITIONAL REQUIREMENTS. OBJECTIVES: 1.OVERVIEW OF THE CLINICAL PRESENTATION AND LONG-TERM IMPLICATIONS OF MALNUTRITION AND FAT-SOLUBLE VITAMIN DEFICIENCIES IN CHILDREN WITH CHOLESTATIC LIVER DISORDERS.2.REVIEW CURRENT AVAILABLE FORMULATION AND PRACTICAL TIPS FOR THE CARE PROVIDER.3.REVIEW THE CURRENTLY AVAILABLE VITAMIN SUPPLEMENTS, FORMULATIONS AND DISCUSSION 4.DISCUSS LACK OF INSURANCE COVER FOR MEDICAL FOOD, VITAMINS AND FINANCIAL BURDEN TO THE FAMILIES."ADVANCES IN DIAGNOSIS AND TREATMENT OF ALAGILLE SYNDROME" WEBINAR AND ON DEMAND CME/MOC PROGRAMALAGILLE SYNDROME (ALGS) IS AN AUTOSOMAL DOMINANT MULTISYSTEM DISORDER CHARACTERIZED BY BILE DUCT PAUCITY AND CHOLESTASIS ALONG WITH MANIFESTATIONS IN OTHER ORGAN SYSTEMS. SINCE THE DISCOVERY OF JAG1 AS THE FIRST DISEASE GENE FOR ALGS IN 1997, MAJOR ADVANCES HAVE BEEN MADE IN THE UNDERSTANDING OF THE PATHOPHYSIOLOGY AND NATURAL HISTORY OF THIS COMPLEX DISORDER. TO FULFILL THESE MEDICAL PROFESSIONAL EDUCATIONAL NEEDS AND GAPS, NASPGHAN DEVELOPED A CME WEBINAR ON "ADVANCES IN DIAGNOSIS AND TREATMENT OF ALAGILLE SYNDROME" OBJECTIVES: 1. TO DEFINE ALAGILLE SYNDROME AND ITS CLINICAL MANIFESTATIONS 2. TO UNDERSTAND THE CURRENT STATE OF THE ART IN GENETIC DIAGNOSIS FOR ALGS, INCLUDING THE STRENGTHS AND LIMITATIONS OF DIAGNOSTIC MODALITIES INCLUDING NEXT GENERATION SEQUENCING PANELS, WHOLE EXOME AND WHOLE GENOME SEQUENCING. 3. TO DISCUSS THE ROLE OF GENETIC MODIFIERS IN LIVER DISEASE SEVERITY IN ALGS. 4. TO UNDERSTAND VARIABILITY IN CLINICAL PRESENTATIONS IN PATIENTS PRESENTING WITH JAG1 AND NOTCH2 MUTATIONS."NEW FRONTIERS IN THE SCIENCE AND PRACTICE OF PARENTERAL NUTRITION." WEBINAR AND ON DEMAND CME/MOC PROGRAMWE ALSO NEED MORE EDUCATION FOR PEDIATRIC GASTROENTEROLOGY SPECIALISTS NEED MORE EDUCATION BECAUSE THE NUMBER OF PATIENTS WITH INTESTINAL FAILURE SEEMS TO BE INCREASING AND MAY NEED TO HAVE TO PROVIDE SPECIALIZED CARE TO THESE PATIENTS. TO FULFILL THESE MEDICAL PROFESSIONAL EDUCATIONAL NEEDS AND GAPS, NASPGHAN PLANS TO DEVELOP A SET OF 4 CME/MOC PART II AND CPE WEBINARS ON "NEW FRONTIERS IN THE SCIENCE AND PRACTICE OF PARENTERAL NUTRITION." THE FOUR TOPICS INCLUDED: 1. OVERALL UPDATE ON PARENTERAL NUTRITION 2. SPECIFIC UPDATE ON PARENTERAL NUTRITION IN NEONATES AND INFANTS 3. UPDATE ON ALTERNATIVE LIPIDS 4. ADDRESSING THE COMPLICATIONS ASSOCIATED WITH PN DELIVERY TRANSNASAL ENDOSCOPY (TNE): GOING WHERE WE HAVE NEVER GONE BEFOREHOWEVER, WITH THE GROWTH OF THIS TECHNOLOGY, AND THE POTENTIAL TO IMPROVE THE MONITORING OF CONDITIONS SUCH AS EOE, GERD, AND CELIAC DISEASE, LIMITED EXPOSURE TO AND KNOWLEDGE OF HOW TO PERFORM THIS TECHNIQUE EXISTS IN PEDIATRICS. ADDITIONALLY, SIGNIFICANT INTEREST HAS BEEN GENERATED SINCE ITS PUBLICATION IN PEDIATRICS.THERE HAS BEEN LIMITED ABILITY TO TEACH AND BROADEN THE REACH OF THIS TECHNIQUE AS WELL. THE USE OF SUCH TECHNIQUE HAS BEEN DEMONSTRATED TO BE IMPORTANT FOR PATIENT SAFETY, IMPROVED MONITORING OF GI CONDITIONS, LOWER COST, AND IMPROVED EFFICIENCY. FOR THIS REASON, NASPGHAN IS ATTEMPTING TO CREATE A WEBINAR TO HELP FACILITATE THE DISTRIBUTION OF KNOWLEDGE AROUND TNE AND IMPROVEMENT IN CARE OF PEDIATRIC PATIENTS.WEBINARTO FULFILL THESE MEDICAL PROFESSIONAL EDUCATIONAL NEEDS AND GAPS, NASPGHAN PLANS TO DEVELOP A CME/MOC WEBINAR ON "TRANSNASAL ENDOSCOPY (TNE): GOING WHERE WE HAVE NEVER GONE BEFORE"OBJECTIVES1.TO UNDERSTAND THE CURRENT STATE OF KNOWLEDGE REGARDING TNE IN PEDIATRICS2.TO REVIEW METHODS AND LIKELY ENCOUNTERED DIFFICULTIES AND SOLUTIONS AROUND IMPLEMENTING TNE IN PEDIATRIC GASTROENTEROLOGY3.TO REVIEW CLINICAL EXPECTATIONS AND TEAM COMPONENTS AROUND IMPLEMENTING PEDIATRIC TNE4.TO UNDERSTAND CURRENT USES AND FUTURE POTENTIAL FOR TNE IN PEDIATRICS5.TO UNDERSTAND BILLING AND CODING AND AVAILABLE TECHNOLOGIES AROUND TNE6. TO REVIEW DEVELOPING RESEARCH AROUND TNE IN PEDIATRICSDOC4MEA SIGNIFICANT PROPORTION OF INFLAMMATORY BOWEL DISEASE (IBD) PATIENTSPRESENT IN CHILDHOOD WITH UP TO ONE THIRD OF PATIENTS PRESENTING BEFORETHE AGE OF 20 YEARS. AS A RESULT, MANY INFLAMMATORY BOWEL DISEASEPATIENTS MUST UNDERGO THE TRANSITION PROCESS, WHERE THEIR CARE ISTRANSFERRED FROM A PEDIATRIC-CENTERED SERVICE TO AN ADULT-CARE SERVICE.THE DOC4ME APP HELPS ADOLESCENTS AND YOUNG ADULTS WITH INFLAMMATORYBOWEL DISEASE FIND A DOCTOR WHO TREATS ADULTS WITH INFLAMMATORY BOWELDISEASE IN A SPECIFIC AREA. DOC4ME ALSO HELPS YOUNG PEOPLE GET READYFOR THEIR MEDICAL VISIT WITH THEIR NEW DOCTOR BY KNOWING WHAT TO BRINGAND HOW TO PREPARE.HEPATITIS C SLIDE SET AND GRAND ROUNDSHCV INFECTION IS CHILDREN IS FREQUENTLY UNRECOGNIZED. RECENTLY PROPOSED UNIVERSAL TESTING STRATEGIES DURING PREGNANCY NEED TO BE IMPLEMENTED. ALTHOUGH LIVER DISEASE IS GENERALLY MILD IN CHILDREN, CHRONIC HEPATITIS AND CIRRHOSIS OCCURS. DIRECT ACTIVE ANTIVIRALS ARE VERY EFFICACIOUS AND SAFE. THEREFORE, ALL HCV INFECTED CHILDREN > 3 YEARS OF AGE SHOULD BE CONSIDERED FOR TREATMENT. PUBLIC AND PROFESSIONAL EDUCATION IS CRITICALLY IMPORTANT TO INCREASE HCV AWARENESS. THE FOUNDATION DEVELOPED A SLIDE DECK AND GRAND ROUNDS PROGRAM TO INCREASE AWARENESS REGARDING TESTING AND MANAGEMENT OF HCV."NUTRITION AND LIVER DISEASE IN PEROXISOMAL BIOGENESIS DISORDERS: DIAGNOSIS AND MANAGEMENT" PATIENTS/CAREGIVERS WITH ZSD NEED MORE EDUCATION REGARDING TREATMENT OPTIONS FOR NUTRITION AND LIVER DISEASE TO OPTIMIZE MANAGEMENT OF AFFECTED PATIENTS. SINCE CAREGIVERS ARE THE BEST ADVOCATES FOR AFFECTED INFANTS, CHILDREN AND ADOLESCENTS, IMPROVING THEIR KNOWLEDGE IN THESE AREAS SHOULD HELP TO BRING NEW ADVANCES TO THE ATTENTION OF THEIR MEDICAL CARE PROVIDERS AND THEREBY HELP TO OPTIMIZE THE OUTCOMES OF ZSD PATIENTS. CAREGIVERS/PATIENTS HAVE THE FOLLOWING DEFICITS WE HOPE TO ADDRESS WITH THE DEVELOPMENT OF EDUCATIONAL RESOURCES -LACK OF KNOWLEDGE -LACK OF ACCESS TO RELEVANT MEDICAL LITERATURE -LACK OF EXPOSURE TO POTENTIAL INTERVENTIONS TO FULFILL THESE MEDICAL PROFESSIONAL EDUCATIONAL NEEDS AND GAPS, NASPGHAN DEVELOPED 2 WEBINARS DIRECTED TOWARD IMPROVED KNOWLEDGE TO CAREGIVERS/PATIENTS WITH ZSD ENTITLED "NUTRITION AND LIVER DISEASE IN PEROXISOMAL BIOGENESIS DISORDERS: DIAGNOSIS AND MANAGEMENT" OBJECTIVES 1. TO DEFINE NORMAL GROWTH AND DEVELOPMENT 2. TO DEFINE THE PATHOPHYSIOLOGY OF GROWTH RETARDATION AND VITAMIN DEFICIENCIES IN ZSD NASPGHAN NUTRITION UNIVERSITY (N2U)THIS COURSE IS DESIGNED TO PROVIDE SPECIALIZED NUTRITION EDUCATION INAREAS ASSOCIATED WITH THE PRACTICE OF PEDIATRIC GASTROENTEROLOGY ANDNUTRITION TO 3RD YEAR FELLOWS, JUNIOR FACULTY AND DIETITIANS. ITTARGETS TWO GROUPS: CANDIDATES WHO RECEIVED MINIMAL NUTRITION EDUCATIONDURING THEIR FELLOWSHIP OR WHOM PLAN TO PURSUE PEDIATRIC NUTRITION ASTHEIR CAREER FOCUS.

OTHER PROGRAM SERVICES:[1] CONSTIPATION CARE PACKAGE - INFORMATION FOR DOCTORS, NURSES AND PATIENTS REGARDING THE TREATMENT AND MANAGEMENT OF CONSTIPATION.[2] PSC WEBINAR - TO EDUCATE PATIENTS, FAMILIES AND CAREGIVERS ABOUT THE DIAGNOSIS AND TREATMENT OF AUTOIMMUNE LIVER DISEASES IN PEDIATRIC PATIENTS.-TO REVIEW STRESS MANAGEMENT, COPING, NUTRITIONAL, LEGAL AND ADVOCACY ISSUES.