To provide information, education, advocacy, and direct assistance to and on behalf of people with bleeding disorders and encourage and support scientific research to improve medical treatments and develop cures for hemophilia and related disorders.
We are here to help all persons with hemophilia and other bleeding disorders.
What Is Hemophilia?
Hemophilia makes it difficult for a person’s blood to clot. Even minor injuries can become dangerous since they may not stop bleeding. Genetic factors primarily cause the disorder to be passed down from parents to children.
Some of the symptoms of hemophilia include:
- Frequent nosebleeds
- Blood in urine or stool
- Unusual, heavy menstrual bleeding
- Easy bruising
- Prolonged bleeding from cuts
- Painful and swollen joints
Tens of thousands of people in the U.S. live with hemophilia. A doctor will only diagnose hemophilia after a blood test confirms a person lacks sufficient blood-clotting proteins. People with hemophilia are more prone to complications from surgery, accidents, and even bruising because they risk having heavy internal and external bleeding.
Care Coordination and Healthcare Partnerships
As one of the primary resources for hemophilia information in New York, we work closely with the people involved in the bleeding disorder community, often serving as a point of contact for vital education.
We provide resources for:
- People with hemophilia – All of our efforts have one thing in mind, to provide direct aid and vital resources to people living with hemophilia. Our important education material helps to keep them up to date on new treatments and programs.
- Caregivers and social workers – Many times, caregivers and social workers bear a heavy burden of advocating for the people they care for. We work to help ease that burden by providing extensive resources to help their patients get the additional care they need.
- Donors – Without donors, our efforts would be limited. Through fundraising, blood donation, and other advocacy events, we help the local community learn more about hemophilia and help them provide for those in need.
- Researchers – Advancing the solution and care available to people with hemophilia can only happen through extensive research. Our grants provide healthcare professionals with the financing needed to continue making breakthroughs.
Fundraising and Grants
Finding new ways to treat and help people with hemophilia is at the root of our organization. We proudly serve the 14 southeastern counties of New York state through dedicated fundraising and research grant efforts.
Our fundraising and sponsorship opportunities drive our ability to provide people with bleeding disorders with important education material and health reminders about the ever-changing healthcare landscape. We can drive awareness about this critical condition by interacting with our local community.
Additionally, we value the research and advancements made by healthcare professionals to provide better solutions for people with bleeding disorders. We continually seek proposals for consideration for grant funding. In turn, we have provided more than $4.6 million since 1965 to hard-working researchers seeking better treatments, outcomes, diagnostics, and potential cures for bleeding disorders.
Serving Our Community
Helping people with hemophilia starts with advocacy and awareness. Using educational events, social outings, and sponsorship opportunities, we know that more people will learn about how to assist the bleeding disorder community.
We know the burden of healthcare can be confusing and financially challenging. Our financial assistance program fills in when medical insurance cannot, and goes further with emergency assistance for medical and other expenses associated with bleeding disorders. We applaud the strony people we have and continue to serve, and look forward to the advancement of better treatments and outcomes.
HANY scholarship awards also play a vital role in helping people with bleeding disorders or their children attend college. Since 2001, we have awarded more than $850,000 worth of scholarships, including 14 recipients this year.
Providing education and advocacy remains the cornerstone of our mission. Our quarterly newsletter and regular events bring the community together to shed light on an often shadowed disorder.
Hemophilia treatments and other healthcare initiatives are constantly changing, often without warning or notice to the patients who rely on the industry. Our resources help organize valuable information for the bleeding disorder community to drive forward aid and solutions.