National Hemophilia Foundation
National Hemophilia Foundation
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About this organization
Mission
The National Hemophilia Foundation is dedicated to finding better treatments and cures for bleeding and clotting disorders and to preventing the complications of these disorders through education, advocacy and research.
About
Health, education, and training - NHF provided funding and created educational content for Factor XIII deficient patients and their families to attend NHF's 2018 Bleeding Disorders Conference, serving a total of 44 attendees. NHF launched a new program for Factor X deficient patients, bringing 41 attendees together to learn more about Factor X and connect with each other. 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 917 participants in 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. 2018 highlights included: an in-person training with key leaders and guest speakers that teaches chapters how to create a women's educational support program and how to evaluate success. This program also included funding for 2 women with a bleeding disorder to attend the NHF Bleeding Disorders Conference; provided seven educational sessions for female consumers at the NHF 2018 Bleeding Disorders Conference 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 2018, over 1200 women took the 'Better You Know' risk assessment tool and 84% 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 2018, stepsforliving.hemophilia.org had 165,000 sessions. NHF provided one in-person Steps for Living train the trainer program for staff and healthcare providers from 50 chapters/HTCs across the country and even a few international participants. For the first time, NHF was also able to offer the full training in Spanish. NHF distributed 13,000 educational print materials in 2018. NHF's Education for Empowerment and Collaborating in Care programs bring workshops out to local chapter and HTC events. NHF facilitated 146 workshops, with over 2,214 participants in 2018. 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 2018, NHF provided trainings to the 26 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 Bleeding Disorders Conference planning committee, CDC content advisory groups for joint health and women with bleeding disorders, 1st-year NYLI leadership training; Washington Days and NHF Bleeding Disorders Conference NYLI training committee, Bleeding Disorders Conference teen track, HemaWare magazine editorial group and social media representative. NYLI members provided educational sessions, advocated on behalf of their states in Washington DC, led peer education programs for teens, and facilitated rap sessions at national meetings. Through HANDI, NHF's information resource center, over 1,782 requests for information were answered in 2018. These requests were received from patients, families, healthcare providers and the general public on such topics as hemophilia, Von Willebrand disease, healthcare coverage, hepatitis C, HIV, inhibitor formation and school issues. In collaboration with Medscape Education, NHF offered 6 educational programs for healthcare providers reaching over 10,000 learners through online offerings on gene therapy for hemophilia for continuing education credit. We also launched new webinars specifically for bleeding disorders on topics such as inhibitors, women's issues, and Von Willebrand disease.
Interesting data from their 2019 990 filing
According to the filing documents, the non-profit's mission is defined as “The national hemophilia foundation is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research.”.
When referring to its tasks, they were referred to as: “Dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research.”.
- The non-profit's state of operation has been legally reported as NY.
- According to the latest filing, the non-profit's address in 2019 is 7 PENN PLAZA SUITE 1204, NEW YORK, NY, 10001.
- The total number of employees reported by the non-profit on their form for 2019 is 100.
- Is not a private foundation.
- Expenses are greater than $1,000,000.
- Revenue is greater than $1,000,000.
- Revenue less expenses is $359,828.
- The organization has 15 independent voting members.
- The organization was formed in 1948.
- The organization pays $8,510,702 in salary, compensation, and benefits to its employees.
- The organization pays $851,546 in fundraising expenses.
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