Organizations
Each of these organizations brings tremendous value to the bleeding disorder community. Explore and find your people! Get educated. Volunteer and be involved. Learn of available assistance.
National Organizations
CHES Foundation
Phone Number: 781-878-8561
Email: info@ches.foundation
Site: https://ches.education/
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Established: 2009
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What they're about:
"CHES is the only national non-profit in the bleeding disorder space whose mission continuously offers meaningful, instructive, and consistent education for Inhibitors, the ultra-rare community and women since 2009."
Coalition of Hemophilia B
Phone Number: 212-520-8272
Email: contact@hemob.org
Site: https://www.hemob.org/
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Established: "Over 35 years ago"
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What they're about:
The Coalition of Hemophilia B's Mission Statement:
"The Coalition for Hemophilia B, Inc. is a national nonprofit dedicated to making quality of life the centerpiece of care for individuals with hemophilia B and their families. For over 35 years, we have advanced our mission through education, empowerment, advocacy, and outreach—always with a family-centered approach, because hemophilia affects the entire family.
Our programs unite patients and caregivers from across the country, creating lasting connections, trusted support systems, and opportunities to gain the knowledge needed to make informed decisions and advocate for themselves and their loved ones.
Our dedicated team brings decades of experience and is deeply engaged with the hemophilia B community, both personally and across every communication channel, to ensure no one faces this journey alone."
FAIR Time for Women Coalition
Phone: No Number Listed
Email: An email can be sent using the portal on FTFWC's website. https://ftfw.org/about/contact/
Site: https://ftfw.org/
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Established: TBD
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What they're about:
"FAIR Time for Women is building a grassroots movement to advance equitable access to diagnosis, care and treatment for women, girls and those assigned female at birth with bleeding disorders such as Hemophilia, Von Willebrand’s Disease, Platelet Storage Pool Disorder, Glanzmann’s Thrombasthenia and others. "
Hemophilia Federation of America
Phone Number: 202-675-6984
Email: An email can be sent using the portal on HFA's website. https://www.hemophiliafed.org/contact-hfa/
Site: https://www.hemophiliafed.org/
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Established: 1994
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What they're about:
"What We Do
We work in conjunction with other national and state organizations on behalf of families living with bleeding disorders. Our officers and staff maintain a highly visible presence on Capitol Hill and speak regularly before the Food and Drug Administration (FDA), Centers for Disease Control and Prevention (CDC), and other key agencies.
We are committed to community education and provide tools and resources for patients to find local and financial assistance for their care.
HFA is headquartered in Washington, D.C., and partners with over 50 state and local community-based affiliated organizations made up of men, women, children, moms, dads, siblings, grandparents and friends impacted by a bleeding disorder. Additionally, we work with healthcare providers, therapy providers, specialty pharmacies, donors, and insurers, who play a significant role in patients’ and caregivers’ lives."
Hope Charities
Phone Number: 888-529-8023
Email: info@hope-charities.org
Site: https://www.hopeforhemophilia.org/
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Established: 2009
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What they're about:
Hope Charities' Mission Statement:
"To give hope and strength to individuals and families living with a chronic illness or rare disease by providing resources, financial assistance, education, and emotional support."
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National Bleeding Disorders Foundation
Phone Number: 212-328-3700
Email: info@bleeding.org
Site: https://www.bleeding.org/
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Established: 1948
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What they're about:
National Bleeding Disorders Foundation's Mission Statement:
"The National Bleeding Disorders Foundation (Formerly the National Hemophilia Foundation) is dedicated to finding cures for inheritable blood and bleeding disorders and to addressing and preventing the complications of these disorders through research, education and advocacy enabling people and families to thrive."
WAVE of Support
Phone Number: 678-471-5719
Email: info@waveofsupport.org
Site: https://waveofsupport.org/
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Established: 2024
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What they're about:
“ 'Advocating for individuals with bleeding disorders and rare diseases through education, support, and genuine connections that make a lasting impact.'
Living with a bleeding disorder or rare disease can feel overwhelming, but you don’t have to face it alone. At Wave of Support, we’re here to provide a community of support, education, and advocacy—built on genuine connections.
Our mission is simple: raise awareness, share resources, and offer a space where no one feels alone. We believe in the power of compassion, knowledge, and change to drive lasting impact.
Whether you’re newly diagnosed, managing your condition, or supporting someone who is, you belong here. Together, we can amplify voices, foster understanding, and create waves that make a difference."
State Chapters
Alaska Hemophilia Association
Phone Number: 9073439232
Email: alaskahemo@gmail.com
Site: https://alaskableedingdisorders.org/Arizona Bleeding Disorders
Phone Number: 6029553947
Email: info@arizonahemophilia.org
Site: https://arizonableedingdisorders.org/Asociacion Puertorriquena de Hemofilia y Condiciones de Sangrado
Phone Number: 7876477985
Email: allanes@hemofiliapr.org
Site: https://www.hemofiliapr.orgBleeding Disorder Alliance Illinois
Phone Number: 3124271495
Email: lburgess@bdai.org
Site: https://www.bdai.org/Bleeding Disorcer Alliance North Dakota (BDAND)
Phone Number: 7013810670
Email: info@bdand.org
Site: http://www.bdand.org/Bleeding Disorders Association of Northeastern New York (BDANENY)
Phone Number: 5187293577
Email: memberservices@bdaneny.org
Site: https://www.bdaneny.orgBleeding Disorders Association of South Carolina (BDASC)
Phone Number: 8643509941
Email: info@bdasc.org
Site: https://bdasc.org/Hemophilia and Bleeding Disorders of Alabama (HBDA)
Phone Number: 3345770125
Email: TBD
Site: https://www.hbda.us/Bleeding Disorders Foundation of North Carolina
Phone Number: 9193190014
Email: info@bleedingdisordersnc.org
Site: https://bleedingdisordersnc.org/Bleeding Disorders of the Heartland
Phone Number: 3197211664
Email: bdh_director@bdheartland.org
Site: https://bdheartland.org/Central California Hemophilia Foundation (CCBDF)
Phone Number: 9164480370
Email: info@cchfsac.org
Site: https://ccbdf.org/Eastern Pennsylvania Bleeding Disorder Foundation (EPBDF)
Phone Number: 6107705215
Email: sarah@epbdf.org
Site: https://epbdf.org/Gateway Hemophilia Association
Phone Number: 3144825973
Email: info@gatewayhemophilia.org
Site: https://gatewayhemophilia.org/Great Lakes Hemophilia Foundation (GLHF)
Phone Number: 4142570200
Email: info@glhf.org
Site: https://glhf.org/Greater Ohio Bleeding Disorder Foundation (GOBDF)
Phone Number: 2168340051
Email: tanya@gobdf.org
Site: https://gobdf.org/Hemophilia Association of New Jersey
Phone Number: 7322496000
Email: info@hanj.org
Site: https://hanj.org/Hemophilia Association of New York (HANY)
Phone Number: 2126825510
Email: admin@hemophiliany.com
Site: https://hemophiliany.com/Hemophilia Association of the Capital Area
Phone Number: 7033527641
Email: director@hacacares.org
Site: https://hacacares.org/Hemophilia Foundation of Maryland (HFM)
Phone Number: 4106612307
Email: info@hfmonline.org
Site: https://hfmonline.org/Hemophilia Foundation of Michigan (HFM)
Phone Number: 7345440015
Email: hfm@hfmich.org
Site: https://hfmich.org/Hemophilia Foundation of Minnesota and Dakotas (HFMD)
Phone Number: 6514068655
Email: info@hfmd.org
Site: https://www.hfmd.org/The Hemophilia Foundation of Northern California
Phone Number: 5106583324
Email: director@hemofoundation.org
Site: https://www.hemofoundation.org/Hemophilia Foundation of Southern California
Phone Number: 6267656656
Email: info@hemosocal.org
Site: https://hemosocal.org/Hemophilia of Indiana (HOII)
Phone Number: 3175700039
Email: info@hoii.org
Site: https://hoii.org/Hemophilia of Georgia (HOG)
Phone Number: 7705188272
Email: TBD
Site: https://www.hog.org/Hemophilia of Outreach El Paso
Phone Number: 9156218285
Email: jescobedo1.hoep@gmail.com
Site: https://hemoelpaso.org/Lone Star Bleeding Disorders Foundation
Phone Number: 7136866100
Email: mcompton@lonestarbleedingdisorders.org
Site: https://www.lonestarbleedingdisorders.org/Louisiana Hemophilia Foundation
Phone Number: 2252911675
Email: director@lahemo.org
Site: https://www.lahemo.org/Midwest Hemophilia Association
Phone Number: 8164795900
Email: info@midwesthemophilia.org
Site: https://midwesthemophilia.org/New York City Hemophilia Chapter (NYCHC)
Phone Number: 9177223887
Email: info@nyhemophilia.org
Site: https://www.nyhemophilia.org/Oklahoma Hemophilia Foundation
Phone Number: 9186052579
Email: info@okbleedingdisorders.org
Site: https://www.okhemophilia.org/Pacific Northwest Bleeding Disorders (PNWBD)
Phone Number: 5417530730
Email: info@pnwbd.org
Site: https://pnwbd.org/Rocky Mountain Hemophilia & Bleeding Disorders Association (RMHBDA)
Phone Number: 4065864050
Email: brad@rmhbda.org
Site: https://rmhbda.org/Southwestern Ohio Hemophilia Foundation (SWOFH)
Phone Number: 9372988000
Email: director@swohf.org
Site: https://www.swohf.org/Texas Central Bleeding Disorders (TCBD)
Phone Number: 9723863865
Email: mail@texcen.org
Site: https://texcen.org/United Hemophilia Foundation-GA
Phone Number: 3017282999
Email: hgates@uhemophilia.org
Site: https://www.unitedhemophilia.org/United Hemophilia Foundation-UT
Phone Number: 8014840325
Email: western@hemophiliautah.org
Site: https://hemophiliautah.org/Western New York Bloodcare
Phone Number: 7168962470
Email: info@wnybloodcare.org
Site: https://wnybloodcare.org/chapter/Western Pennsylvania Bleeding Disorders Foundation (WPBDF)
Phone Number: 7247416160
Email: info@wpbdf.org
Site: https://wpbdf.org/