Helpful Websites
Being diagnosed with a rare bleeding disorder can be very overwhelming and it can be hard to separate fact from fiction. Below is a comprehensive overview of reputable websites and resources that can help you find the answers and support you need. Questions about the resources below? Contact our social worker at (585) 922-5700 or eric.iglewski@rochesterregional.org for additional guidance and support.
- American Thrombosis & Hemostasis Network: ATHN partners with hemophilia treatment centers (HTCs) to establish a safe and secure database of patient health information, enabling the scientific community to gain a better understanding of bleeding disorders. In addition, they offer a useful online tool to help patients record factor use and monitor bleeds called ATHNadvoy.
- Centers for Disease Control and Prevention: The CDC is the national public health institute of the United States – its main goal is to protect public health and safety through the control and prevention of disease, injury, and disability. This agency provides some funding to Hemophilia Treatment Centers and offers state-of-the-art medical information on its website.
- CDC Hemophilia Treatment Center Directory: This link provides a comprehensive directory of all federally funded Hemophilia Treatment Centers (HTCs) across the United States. It’s a very useful tool if traveling or moving to a new state and you want to transfer care to a new HTC
- The Coalition for Hemophilia B: This foundation strives to make quality of life the focal point of treatment for people with hemophilia B and their families through education, empowerment, advocacy, and outreach.
- The Foundation for Women & Girls with Blood Disorders: They work to ensure all women and girls with blood disorders are correctly diagnosed and optimally managed at every life stage. This website provides a wide array of educational resources and tools for both patients and medical providers.
- Hemophilia Federation of America: HFA is a community-based organization that serves people with bleeding disorders and their families
in the U.S.A. HFA provides national and regional programs, services and advocacy through its local chapters, as well as an annual national Symposium. - Hemophilia of Georgia Handbook: HoG first published this informative book for the bleeding disorders community in 1988. It is a comprehensive guide to living with a bleeding disorder and an invaluable resource for new patients and families (available in both English and Spanish).
- LA Kelley Communications: This organization provides free books, newsletters and tools to help educate and support people with bleeding disorders and their families
The National Bleeding Disorders Foundation: Formerly known as the National Hemophilia Foundation, NBDF 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. This website offers a wide range of educational links and resources, including free publications. In addition, NBDF hosts their national Bleeding Disorders Conference (the BDC) each year where community members can learn cutting edge new information about bleeding disorders and build supportive connections with others.- The New York State Bleeding Disorders Coalition: This is a partnership of not-for-profit organizations dedicated to public advocacy on behalf of people affected by bleeding disorders in New York State. The Coalition is dedicated to ensuring that people affected by bleeding disorders have access to quality health care, giving them the opportunity to live a full and active life. The Coalition hosts an annual “Albany Days” advocacy event for the regional bleeding disorders community to help raise awareness with elected officials at the state capital.
- Steps for Living: This comprehensive, interactive website provides outstanding bleeding disorders education for all of life’s stages – created and overseen by the National Hemophilia Foundation.
- The World Federation of Hemophilia: WFH serves the global bleeding disorders community by providing patient/provider education, outreach and advocacy. WFH provides a unique “Twinning” program which creates short-term collaborative partnerships between medical professionals in developing and developed countries, helping to globally improve care for all people with bleeding disorders, regardless of where they live.
Compliance Resources
The Mary M. Gooley Hemophilia Center strives to provide high quality care to our patients while also following strict legal and ethical standards. The Center has a comprehensive Compliance Program to ensure that every member of our team consistently maintains our high caliber of integrity. If patients, family members, staff or vendors have any concerns regarding unethical, illegal or suspicious conduct at the Center, please contact our Compliance Officer, Eric Iglewski, directly and confidentially by calling 585-922-4177. To learn more about the Center’s Compliance Policies, our Privacy Policy and other related resources, please explore the links below:
- Our Compliance Policy
- Privacy Policy
- HIPAA Privacy Notice
- Patient Bill of Rights
- No Surprises Act / Protections Against Surprise Medical Bills
If you have any questions or concerns regarding the Center’s Compliance Program, please contact our Compliance Officer:
Eric Iglewski
Mary M. Gooley Hemophilia Center
1415 Portland Avenue
Suite 500
Rochester, NY 14621
Direct Phone: 585-922-4177
