HEMOPHILIA ASSOCIATION OF NEW YORK INC
131 WEST 33RD STREET NO 11D, NEW YORK, NY 10001 www.hemophiliany.com

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Organizations Filed Purposes: THE ASSOCIATION PROVIDES INFORMATION ADVOCACY, AND DIRECT ASSISTANCE TO PEOPLE WITH BLEEDING DISORDERS. THE ASSOCIATION HAS BEEN SERVING NEW YORK CITY, LONG ISLAND AND THE HUDSON VALLEY SINCE ITS INCEPTION. (CONTINUED ON SCHEDULE O)IT IS THE LEADING SUPPORTER OF RESEARCH TO IMPROVE TREATMENTS AND TO FUND CURES FOR HEMOPHILIA AND RELATED CONDITIONS.

TO PROVIDE INFORMATION, ADVOCACY, ASSISTANCE AND SCHOLARSHIPS FOR THOSE WITH BLEEDING DISORDERS, AS WELL AS PROVIDE RESEARCH FUNDING FOR BETTER THERAPIES AND POTENTIAL CURES FOR BLEEDING DISORDERS.

PATIENT SERVICES AND THE MAJORITY OF ASSOCIATION ACTIVITY IS DIRECTED TOWARD PROVIDING INFORMATION AND ASSISTANCE TO THE BLEEDING DISORDERS POPULATION IN GENERAL AND TO SPECIFIC INDIVIDUALS AND FAMILIES THEREIN. DURING 2019-2020 55.8% OF STAFF TIME-EFFORT WAS EXPENDED IN THIS SERVICE FUNCTION, WHICH INCLUDES PROVIDING FINANCIAL ASSISTANCE, SPECIFIC PROBLEM RESOLUTION, COUNSELING, OUT-REFERRALS, EDUCATION AND CAMP SCHOLARSHIPS, A 24-HOUR HELPLINE, ADVOCACY, AND OF INFORMATIONAL AND EDUCATIONAL MATERIALS FOR PATIENTS/CLIENTS. DURING THE YEAR 734 PERSONS WITH BLEEDING DISORDERS AND THEIR FAMILIES WERE SERVED. 12% OF CLIENTS RECEIVED EMERGENCY FINANCIAL ASSISTANCE OR OTHER FORMS OF SPECIFIC INTERVENTION. PATIENT GROUP MEETINGS WERE CONDUCTED, THROUGHOUT THE YEAR. A TEEN RETREAT, A FAMILY SYMPOSIUM AND A WOMEN'S RETREAT: FOCUSING ON GENDER BIAS IN HEALTHCARE WERE HELD, AS WELL AS 16 OTHER IN-PERSON AND VIRTUAL MEETINGS THROUGHOUT THE YEAR.

PUBLIC AND PROFESSIONAL HEALTH EDUCATION- THE ASSOCIATION ENCOURAGES IMPROVEMENT OF THE KNOWLEDGE, SKILLS, AND JUDGMENT OF PHYSICIANS AND ALLIED HEALTH PROFESSIONALS WORKING WITH PEOPLE WHO HAVE BLEEDING DISORDERS.

RESEARCH- THE ORGANIZATION SUPPORTS SCIENTIFIC STUDIES AND INVESTIGATIONS AT QUALIFIED INSTITUTIONS TOWARD FINDING ALLEVIATIONS OF THE MEDICAL PROBLEMS OF HEMOPHILIA AND RELATED BLEEDING DISORDERS AND THEIR COMPLICATIONS. DURING 2019-2020 HANY CONTINUED THE SUPPORT OF A RESEARCH PROJECT AT THE UNIVERSITY OF COLORADO, DENVER TITLED, "MICROFLUIDIC DEVICE TO DEFINE PARAMETERS OF PRIMARY AND SECONDARY HEMOSTASIS & PREDICT BLEEDING IN VON WILLEBRAND'S."

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