NATIONAL HEMOPHILIA FOUNDATION
7 PENN PLAZA SUITE 1204, NEW YORK, NY 10001 www.hemophilia.org

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Organizations Filed Purposes: DEDICATED TO FINDING BETTER TREATMENTS AND CURES FOR INHERITABLE BLEEDING DISORDERS AND TO PREVENTING THE COMPLICATIONS OF THESE DISORDERS THROUGH EDUCATION, ADVOCACY AND RESEARCH.

HEALTH, EDUCATION AND TRAINING - NHF PROVIDED FUNDING AND CREATED EDUCATIONAL CONTENT FOR THOSE WITH RARE FACTOR DEFICIENCIES AND PLATELET DISORDERS AND THEIR FAMILIES TO ATTEND NHF'S 2019 RARE BLEEDING DISORDERS CONFERENCE, SERVING TOTAL OF 86 ATTENDEES. NHF ALSO ORGANIZED 3 NATIONAL INHIBITOR EDUCATION SUMMITS AND A SPANISH INHIBITOR SUMMIT, FOR PATIENTS AND FAMILIES EXPERIENCING THE COMPLICATION OF AN INHIBITOR. THESE MULTI-DAY NATIONAL SUMMITS PROVIDED EDUCATION AND PEER CONNECTIONS FOR 704 PARTICIPANTS TOTAL.THE PRIMARY GOALS OF THE NATIONAL HEMOPHILIA FOUNDATION'S (NHF'S) VICTORY FOR WOMEN AND BETTER YOU KNOW PROGRAMS ARE: 1) TO INCREASE AWARENESS TO FACILITATE EARLY AND ACCURATE DIAGNOSES; AND 2) TO PROVIDE AFFECTED WOMEN WITH EDUCATION AND SUPPORT. 2019 HIGHLIGHTS INCLUDED: LAUNCH OF THE BETTER YOU KNOW PRINT MATERIALS TOOLKIT SENT TO 52 CHAPTERS AND OVER 130 HTCS, AS WELL AS THE COMPLETION OF A BOOK ON PUBERTY FOR GIRLS WITH BLEEDING DISORDERS. THIS PROGRAM ALSO INCLUDES FUNDING FOR TWO WOMEN WITH A BLEEDING DISORDER TO ATTEND THE NHF BLEEDING DISORDERS CONFERENCE; PROVIDED SEVEN EDUCATIONAL SESSIONS FOR FEMALE CONSUMERS AT THE NHF 2019 ANNUAL MEETING; AND PROVIDED WORKSHOPS FOR CONSUMERS AT CHAPTER EDUCATION DAYS AND WOMEN'S RETREATS. ABOUT 6,700 HEALTHCARE PROFESSIONALS PARTICIPATED IN NHF'S WEBINAR SERIES FOR NON-HEMATOLOGY FOCUSED PROVIDERS TO IMPROVE OUTCOMES FOR WOMEN WITH VWD AND OTHER BLEEDING DISORDERS. IN ADDITION, IN 2019, 1288 WOMEN TOOK THE BETTER YOU KNOW RISK ASSESSMENT TOOL AND 85% HAD SYMPTOMS OF A BLEEDING DISORDER.STEPS FOR LIVING IS A MULTIMEDIA EDUCATIONAL PROGRAM DESIGNED TO INCREASE ACCESS TO AGE AND CULTURALLY APPROPRIATE INFORMATION SO THAT CHILDREN, TEENS, ADULTS, AND FAMILIES CAN MANAGE THE DAILY CHALLENGES OF LIVING WITH A BLEEDING DISORDER. THIS ALSO INCLUDES ENSURING SUCCESSFUL LIFE TRANSITIONS AND PREVENTING SECONDARY COMPLICATIONS. IN 2019, STEPSFORLIVING.HEMOPHILIA.ORG HAD OVER 176,000 SESSIONS. NHF PROVIDED ONE IN-PERSON STEPS FOR LIVING TRAIN THE TRAINER PROGRAM IN ENGLISH AND SPANISH FOR 35STAFF AND HEALTHCARE PROVIDERS FROM CHAPTERS/HTCS ACROSS THE COUNTRY AND EVEN A FEW INTERNATIONAL PARTICIPANTS. NHF'S EDUCATION FOR EMPOWERMENT PROGRAM BRING WORKSHOPS OUT TO LOCAL CHAPTER AND HTC EVENTS. NHF FACILITATED 141 WORKSHOPS, WITH OVER 2600 PARTICIPANTS IN 2019.NHF HAS DESIGNED THE NATIONAL YOUTH LEADERSHIP INSTITUTE (NYLI) TO ASSIST YOUNG PEOPLE FROM THE BLEEDING DISORDERS COMMUNITY TO BECOME WELL-TRAINED, RECOGNIZED LEADERS. NHF ACHIEVES THESE OUTCOMES BY PROVIDING YOUNG ADULTS WITH TRAINING, SUPPORT AND OPPORTUNITIES TO PROVIDE EDUCATION TO THE BLEEDING DISORDERS COMMUNITY. IN 2019, NHF PROVIDED TRAININGS TO THE 27 MEMBERS OF NYLI ON TOPICS INCLUDING PUBLIC SPEAKING, ADVOCACY, NON-PROFIT MANAGEMENT AND FUNDRAISING. NINE NYLI MEMBERS ASSUMED LEADERSHIP POSITIONS IN A VARIETY OF NHF PROGRAMS, INCLUDING SERVING AS A NON-VOTING MEMBER OF THE NHF BOARD; NHF ANNUAL MEETING PLANNING COMMITTEE; CDC CONTENT ADVISORY GROUPS FOR JOINT HEALTH AND WOMEN WITH BLEEDING DISORDERS; 1ST-YEAR NYLI LEADERSHIP TRAINING; WASHINGTON DAYS AND NHF ANNUAL MEETING NYLI TRAINING COMMITTEE; ANNUAL MEETING TEEN TRACK; HEMAWARE MAGAZINE EDITORIAL GROUP; AND SOCIAL MEDIA REPRESENTATIVE. NYLI MEMBERS PROVIDED EDUCATIONAL SESSIONS, ADVOCATED ON BEHALF THEIR STATES WASHINGTON DC, LED PEER EDUCATION PROGRAMS FOR TEENS, AND FACILITATED RAP SESSIONS AT NATIONAL MEETINGS. THROUGH HANDI, NHF'S INFORMATION RESOURCE CENTER, OVER 1,126 REQUESTS FOR INFORMATION WERE ANSWERED IN 2019. THESE REQUESTS WERE RECEIVED FROM PATIENTS, FAMILIES, HEALTHCARE PROVIDERS AND THE GENERAL PUBLIC ON SUCH TOPICS AS HEMOPHILIA, VON WILLEBRAND DISEASE, INHERITED BLEEDING DISORDERS, HEALTHCARE COVERAGE, TREATMENT, GENE THERAPY, WOMEN'S ISSUES, INHIBITOR FORMATION AND SCHOOL ISSUES. IN COLLABORATION WITH MEDSCAPE EDUCATION, NHF OFFERED 7 EDUCATIONAL PROGRAMS FOR HEALTHCARE PROVIDERS IN 2019, REACHING OVER 10,000 LEARNERS THROUGH ONLINE OFFERINGS ON GENE THERAPY FOR HEMOPHILIA AND EMERGENCY DEPARTMENT MANAGEMENT FOR CONTINUING EDUCATION CREDIT. THESE INCLUDE:WHY GENE THERAPY FOR HEMOPHILIA? EXPLORING THE CHALLENGES OF CURRENT THERAPIES;THE SCIENCE OF GENE THERAPY FOR HEMOPHILIA;MOVING BEYOND FACTOR: SHIFTING THE PARADIGM IN HEMOPHILIA THROUGH GENE THERAPY;EVALUATION AND MANAGEMENT OF HEMOPHILIA IN THE EMERGENCY DEPARTMENT.NEW WEBINARS WERE ALSO LAUNCHED SPECIFICALLY FOR BLEEDING DISORDERS ON TOPICS SUCH AS WOMEN'S ISSUES AND VON WILLEBRAND DISEASE; AN INTRODUCTION TO THE RECOGNITION, APPROPRIATE DIAGNOSIS, AND TIMELY MANAGEMENT OF VWD AND OTHER BLEEDING DISORDERS AMONG WOMEN IN NON-HEMATOLOGY HEALTH CARE SETTINGS;ADVANCED CONSIDERATIONS FOR THE RECOGNITION, APPROPRIATE DIAGNOSIS, AND TIMELY MANAGEMENT OF VWD AND OTHER BLEEDING DISORDERS AMONG WOMEN IN NON-HEMATOLOGY HEALTH CARE SETTINGS;IMPROVING OUTCOMES FOR FEMALES WITH BLEEDING DISORDERS IN NON-HEMATOLOGY HEALTH CARE SETTINGS.

COMMUNITY SERVICES - NHF'S PUBLIC POLICY DEPARTMENT WORKS TO ESTABLISH AND ADVOCATE FOR POLICIES THAT PROMOTE THE HEALTH, SAFETY, RIGHTS AND ACCESS TO CARE FOR PEOPLE WITH BLEEDING DISORDERS BY EDUCATING FEDERAL AND STATE LAWMAKERS, OTHER GOVERNMENT AGENCIES AND OFFICIALS , INDUSTRY AND ALLIED ORGANIZATIONS. TWO KEY AREAS OF FOCUS ARE PAYER AND CONSUMER EDUCATION, AND SELF-ADVOCACY. THE PUBLIC POLICY DEPARTMENT PROVIDES TRAINING, TOOLS AND HANDS-ON SUPPORT TO CONSUMERS TO HELP THEM BECOME EFFECTIVE SELF-ADVOCATES. CONSUMERS ARE ENCOURAGED TO PARTICIPATE IN NHF'S ANNUAL WASHINGTON DAYS PROGRAM, WHICH IS A GRASSROOTS EVENT THAT BRINGS PATIENTS AND THEIR FAMILIES TO THE HILL TO MEET WITH THEIR MEMBERS OF CONGRESS. NHF ALSO PROVIDES A SERIES OF EDUCATIONAL OPPORTUNITIES FOR PAYERS TO HELP THEM BETTER UNDERSTAND THE UNIQUE HEALTHCARE NEEDS OF THOSE AFFECTED BY BLEEDING DISORDERS, INCLUDING LIVE PRESENTATIONS, WEBINARS, ONLINE EDUCATIONAL MODULES AND A JOINT COLLABORATIVE BRINGING TOGETHER PAYERS, MEDICAL PROVIDERS AND PATIENTS.

RESEARCH - NHF AWARDED TWO (2) NHF/TAKEDA CLINICAL FELLOWSHIPS IN 2019. ONE FELLOWSHIP AWARD WAS BESTOWED TO DR. ANG LI OF BLOODWORKS NW/WASHINGTON CENTER FOR BLEEDING DISORDERS AND THE UNIVERSITY OF WASHINGTON, AND THE OTHER AWARD WENT TO DR. MEGAN BROWN OF THE CHILDREN'S HEALTHCARE OF ATLANTA AND EMORY UNIVERSITY. THE NHF NURSING EXCELLENCE FELLOWSHIP WAS AWARDED TO NURSE LYDIA JOHNSON AT CARDINAL GLENNON CHILDREN'S HOSPITAL IN ST. LOUIS, MISSOURI FOR HER PROJECT, "EMS EDUCATION REGARDING BLEEDING DISORDERS AND THE TREATMENT REQUIRED." THE NHF SOCIAL WORK EXCELLENCE FELLOWSHIP WAS AWARDED TO A SOCIAL WORKER MARIA IANNONE AT THE UNIVERSITY OF ARIZONA FOR HER PROJECT, "THE PREVALENCE OF DEPRESSION AND ANXIETY IN CHILDREN WITH COAGULOPATHIES BEING TREATED AT A HEMOPHILIA AND THROMBOSIS CENTER." THE NHF PHYSICAL THERAPY EXCELLENCE FELLOWSHIP WAS AWARDED TO A PHYSICAL THERAPIST LENA VOLLAND AT UNIVERSITY OF ST. AUGUSTINE FOR HER PROJECT "ANALYSIS OF LOWER EXTREMITY JOINT CHARACTERISTICS, BIOMECHANICS, AND NEUROMOTOR CONTROL DURING GAIT IN PATIENTS WITH HEMOPHILIA."A TOTAL OF THREE (3) NHF JUDITH GRAHAM POOL POSTDOCTORAL RESEARCH FELLOWSHIPS WERE AWARDED TO THE FOLLOWING INSTITUTIONS AND RESEARCHERS RESPECTIVELY: DR. RAGHUNATH AZHWAR AT THE UNIVERSITY OF MICHIGAN FOR THE PROJECT "IDENTIFICATION OF A POTENTIAL NOVEL ROLE FOR FACTOR IX USING A ZEBRAFISH MODEL", DR. CALVIN STEPHANS AT STANFORD UNIVERSITY FOR THE PROJECT "PRECLINICAL DEVELOPMENT OF NUCLEASE-FREE GENE EDITING FOR LIFELONG TREATMENT OF BLEEDING DISORDERS", AND DR. SEEMA PATEL AT EMORY UNIVERSITY AFLAC CANCER AND BLOOD DISORDERS CENTER FOR THE PROJECT, " THE EPITOPES RECOGNIZED IN THE EARLY IMMUNE RESPONSE TO FACTOR VIII".THE INNOVATIVE INVESTIGATOR RESEARCH AWARD (IIRA) PROVIDES RESEARCH AWARDS TO ANY HEALTH CARE PROVIDER ON THE MULTI-DISCIPLINARY TEAM WITHIN THE HEMOPHILIA TREATMENT CENTER (HTC) NETWORK FOR INNOVATIVE PROJECTS THAT PROMOTE THE DEVELOPMENT OF NOVEL TECHNOLOGIES AND/OR THERAPIES TO ADVANCE THE FIELD OF BLEEDING DISORDERS RESEARCH. TWO IIRAS WERE AWARDED IN 2019 TO THE FOLLOWING INSTITUTIONS AND RESEARCHERS RESPECTIVELY: DR. ANDREW YEE AT BAYLOR COLLEGE OF MEDICINE AND TEXAS CHILDREN'S HEMOPHILIA AND THROMBOSIS CENTER FOR THE PROJECT "FUNCTIONAL INTERPRETATION OF GENETIC VARIANTS IN VON WILLEBRAND FACTOR AND DR. TAM PERRY AT WAYNE STATE UNIVERSITY AND THE UNIVERSITY OF CALIFORNIA SAN FRANCISCO HEMOPHILIA TREATMENT CENTER FOR THE PROJECT, "NAVIGATING TIME AND SPACE: EXPERIENCES OF AGING WITH HEMOPHILIA". ONE BRIDGE GRANT, AVAILABLE TO EXPERIENCED HEMATOLOGY INVESTIGATORS FOCUSED ON INHERITED BLEEDING DISORDERS WAS AWARDED TO DR. JANICE STABER AT THE UNIVERSITY OF IOWA AND THE IOWA HEMOPHILIA TREATMENT CENTER FOR THE PROJECT "UNDERSTANDING OF A NEUROPHENOTYPE IN HEMOPHILIA A".IN ADDITION, NHF CONTINUED TO SUPPORT SEVERAL RESEARCH INITIATIVES:CAMP SURVEY TO IDENTIFY GAPS IN CARE AND UNDERSTAND HOW CAMPS FUNCTION. PAIN PRACTICES SURVEY - TO UNDERSTAND HOW PAIN IS MANAGED WITHIN THE BLEEDING DISORDERS COMMUNITY AND HOW THE HTC SYSTEM HAS ADAPTED TO THE 2016 CDC PAIN GUIDELINES. TELEGENETIC SURVEY - FOR WOMEN AND ADOLESCENT GIRLS WHO PARTICIPATED IN THE MLOF WOMEN'S PILOT STUDY, RECEIVED GENETIC TESTING BUT NOT GENETIC COUNSELING DONE VIA TELEMEDICINE. RESULTS WILL BE TABULATED AND PRESENTED AT THE WFH CONGRESS IN KUALA LAMPUR, MALAYSIA IN 2020.MYBDC (MY BLEEDING DISORDER COMMUNITY) - A PATIENT POWERED REGISTRY INTENDED TO CAPTURE A 360-DEGREE VIEW OF LIVING WITH A BLEEDING DISORDER, DIRECTLY FROM THOSE AFFECTED AND THEIR RELATIVES TO ENHANCE THE ABILITY OF RESEARCHERS TO IMPROVE QUALITY OF LIFE (QOL), CURRENT TREATMENTS, IDENTIFY RESEARCH QUESTIONS IMPORTANT TO COMMUNITY MEMBERS, DISCOVER TRANSFORMATIONAL THERAPIES. QI PROJECT - A PILOT PROGRAM TO REFINE A LOGGING PLATFORM BASED ON FEEDBACK FROM THE NORTHERN REGIONAL BLEEDING DISORDERS CENTER (NRBDC) AND WESTERN NEW YORK BLOODCARE (WNY) HEMOPHILIA TREATMENT CENTER (HTC) PARTICIPANTS USING CONTINUED EVALUATIONS TO MEASURE EASE OF USE AND PATIENT SATISFACTION WITH THE AUDAIRE SMARTPHONE APPLICATION AT 2 WEEKS, 3 MONTHS, AND 6 MONTHS AFTER IMPLEMENTATION AND TO DESCRIBE CLOTTING FACTOR ASSAY MANAGEMENT UTILIZING THE THIS PLATFORM.

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