Hemophilia Association Of New York Inc

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: MOST OF THE ASSOCIATION'S ACTIVITY IS DIRECTED TOWARD PROVIDING INFORMATION AND ASSISTANCE TO THE BLEEDING DISORDERS COMMUNITY AND TO SPECIFIC INDIVIDUALS AND FAMILIES THEREIN. DURING 2020-2021 52.7% OF STAFF TIME-EFFORT WAS EXPENDED IN THIS SERVICE FUNCTION, WHICH INCLUDES PROVIDING FINANCIAL ASSISTANCE, SPECIFIC PROBLEM RESOLUTION, COUNSELING, OUT-REFERRALS, EDUCATION, ADVOCACY, AND INFORMATIONAL AND EDUCATIONAL MATERIALS FOR PATIENTS/CLIENTS. DURING THE FISCAL YEAR 20/21 755 PERSONS WITH BLEEDING DISORDERS AND THEIR FAMILIES WERE SERVED. FIFTEEN PERCENT (15%) OF CLIENTS RECEIVED EMERGENCY FINANCIAL ASSISTANCE OR OTHER FORMS OF SPECIFIC INTERVENTION TOTALING $74,578.23 - $43,401.98 WAS SPECIFIC TO SCHOLARSHIP AWARDS. PATIENT GROUP MEETINGS WERE CONDUCTED THROUGHOUT THE YEAR. A VIRTUAL TEEN CONFERENCE (SELF ADVOCACY, INDEPENDENCE, AND LEADERSHIP -S.A.I.L.) WAS HELD, A 2-DAY VIRTUAL "SYMPOSIUM FOR NO 1" WAS HELD AND THERE WERE ADDITIONALLY 12 VIRTUAL CLIENT MEETINGS THROUGHOUT THE YEAR. THERE WERE 4 NEWSLETTERS PUBLISHED AND DISTRIBUTED TO THE COMMUNITY AND THERE WAS AN EDUCATIONAL PAMPHLET DEVELOPED, PUBLISHED, AND DISTRIBUTED THAT PROVIDED INFORMATION TO OUR LATINO COMMUNITY THAT WAS IN SPANISH ON INSURANCE PRODUCTS. THE ASSOCIATION DOES NOT CHARGE MEMBERSHIP NOR DOES IT CHARGE FOR ATTENDANCE TO ANY PROGRAMS.

RESEARCH: THE ORGANIZATION SUPPORTS SCIENTIFIC STUDIES AND INVESTIGATIONS AT QUALIFIED INSTITUTIONS TOWARD FINDING ALLEVIATIONS OF THE MEDICAL PROBLEMS OF HEMOPHILIA AND OTHER BLEEDING DISORDERS AND THEIR COMPLICATIONS. DURING THE FY 20/21 THE ASSOCIATION COMPLETED THEIR SUPPORT OF A RESEARCH PROJECT AT THE UNIVERSITY OF COLORADO, ENTITLED, "MICROFLUIDIC DEVICE TO DEFINE PARAMETERS OF PRIMARY AND SECONDARY HEMOSTASIS & PREDICT BLEEDING IN VON WILLEBRAND'S".

THE COMMUNITY SERVICE PROGRAM - USED TO MEET THE NEEDS OF THOSE IMPACTED BY DISRUPTIONS TO THEIR ACADEMIC STANDARDS OF LEARNING.

PUBLIC AND PROFESSIONAL HEALTH EDUCATION: THE ASSOCIATION ENCOURAGES IMPROVEMENT OF THE KNOWLEDGE, SKILLS, AND JUDGEMENT OF PHYSICIANS AND ALLIED HEALTH PROFESSIONALS WORKING WITH PEOPLE WHO HAVE BLEEDING DISORDERS. THE SYMPOSIUM FOR NO 1 WAS ALSO ATTENDED BY MEDICAL PROFESSIONALS WHO TREAT RARE BLEEDING DISORDERS.