patient organizations
Since hemophilia and other bleeding disorders are lifelong disorders, groups known as patient organizations have been established to offer support with the various issues and challenges that bleeding disorder patients face throughout their life’s journey.
The organizations below can assist with education, financial support, access to programs that share experiences of other people living with a bleeding disorder and so much more.
Learn more about the organization closest to you and what they have to offer.
The Bleeding Disorders Association of Northeastern New York (BDANENY) – northeast
The Bleeding Disorders Association of Northeastern New York, Inc. has been providing services and programs that offer emotional, educational, financial assistance and support to northeastern New York since 1968.
Contact
Beth Mahar
Executive Director
Beth.m@bdaneny.org
memberservices@bdaneny.org
Bleeding Disorders Association of the Southern Tier (BDAST) – Southern Tier
The BDAST is dedicated to helping people with bleeding disorders and their families through support, advocacy, and education.
Contact
Cheri Wakeham, LCSW
Outreach Coordinator
cheri@bdast.org
Hemophilia Association of New York – south east
Covering the 14 southeastern counties in New York State, the HANY Association is an organization of and for persons with bleeding disorders and their families that offer aide, education, and promote advocacy.
Contact
Mary M. Gooley Hemophilia Center, Inc. – Rochester
The Mary M. Gooley Hemophilia Center is a NYS licensed diagnostic and treatment center and a federally recognized Hemophilia Treatment Center (HTC) located in Rochester, NY. Through the efforts of their expert staff, the Center provides treatment, education, advocacy, research and supportive programs to patients and their families.
Contact
Tom Wilmarth
President & CEO
thomas.wilmarth@rochesterregional.org
new York City Hemophilia Chapter (NYCHC) – NEw York City
The NYCHC’s mission is to foster a sense of community amongst people affected by bleeding disorders in the greater NYC area, aiming to improve their health outcomes and quality of life.
Contact
WNY Bloodcare – western New york
Western New York BloodCare is a licensed diagnostic and treatment center offering health maintenance services, advocacy, education, and research initiatives for persons with blood disorders.
Chapter Services Contact
John Alduino
jalduino@wnybloodcare.org
HTC Contact
Tom Greico
Executive Director
Tgreico@wnybloodcare.org
Bleeding Disorders Advocacy Network (BDAN)
Formed in 2007, BDAN creates and provides resources for people affected by bleeding disorders. From youth educational games and activities to legislative advocacy resources, they have devoted their time to helping those, like themselves, who are affected by bleeding disorders.
Contact
Bob Graham
bobgraham04@msn.com
National Patient Community OrganizationS
The Coalition for Hemophilia B
As a national nonprofit our mission is to make quality of life the focal point of treatment for individuals with Hemophilia B through education, advocacy, and support. Our team members have over 25 years of experience in the Hemophilia B community. For more information on our programs and resources visit our website.
Contact
Hemophilia Federation of America (HFA)
Hemophilia Federation of America (HFA) is a community based organization that serves people with bleeding disorders and their families in the USA. With a broad mission to assist and advocate, HFA provides programs, services and policy education and support through its Member Organization affiliations as well as direct to consumers.
Contact
National bleeding disorders Foundation (formerly nhf)
The National Bleeding Disorders 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. Established in 1948, the National Bleeding Disorders Foundation has chapters throughout the country. Its programs and initiatives are made possible through the generosity of individuals, corporations and foundations as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC).
Contact
National Headquarters
handi@hemophilia.org
Resource Center
everylife foundation
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.
national organization for rare disorders (NORD)
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.