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Group Embracing Together

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

    Website: 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."

  • Cruz’s Fishermen

    Phone Number: Unlisted. Email is preferred. 

    Email: info@cruzsfishermen.org

    Website: https://cruzsfishermen.org/

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    Established: 2013

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    What They're About:

     Cruz’s Fishermen is here to assist with youth development and community engagement on multiple platforms that merges education with experiences with peer-to-peer growth and development. 

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    We highlight programs that educate youth and community members from within merging development engagement through experiences is our method of mentorship storytelling in partnership to grow our world view into the reality we all want to participate in being involved in and grow our families, friends and partners.

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    This is the experience of growth being part of Cruz’s Fishermen Family.

  • The Coalition of Hemophilia B

    Phone Number: 212-520-8272

    Email: contact@hemob.org

    Website: 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: Unlisted

    Email: Web portal available https://ftfw.org/about/contact/

    Website: 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. "

  • Free Bleeders, Inc.

    Phone Number: 770-710-2097

    Email: info@freebleeders.org

    Website: www.FreeBleeders.org

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    Established: 2018

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    What They're About: 

    "Free Bleeders, Inc. is a nonprofit organization dedicated to educating, advocating for, and empowering women and girls affected by bleeding disorders. We create safe, supportive spaces where women can connect, build community, increase their knowledge, and develop the confidence to become the CEO of their health.

    Through educational programming, advocacy initiatives, community events, retreats, mentorship, and direct support, Free Bleeders works to ensure that women, especially those who have historically been overlooked, underdiagnosed, or dismissed, have the information, resources, and sisterhood they need to advocate for themselves and live beyond their diagnosis."
     

  • Hemophilia Federation of America

    Phone Number: 202-675-6984

    Email: Web portal available at https://www.hemophiliafed.org/contact-hfa/

    Website: 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

    Website: 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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  • LA Kelley Communications

    Phone Number: 978-821-6197

    Email: laurie@kelleycom.com

    Website: https://www.kelleycom.com/

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    Established: 1990

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    What They're About:

    "Provide comprehensive and original books on bleeding disorders, free of charge; provides free factor and resources to patients in developing countries."

  • National Bleeding Disorders Foundation

    Phone Number: 212-328-3700

    Email: info@bleeding.org

    Website: 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

    Website: 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."

  • World Federation of Hemophilia

    Phone Number: 514-875-7944

    Email: wfh@wfh.org

    Website: https://wfh.org/

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    Established: 1963 

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    What They're About: 

    "The World Federation of Hemophilia (WFH) is a non-profit organization dedicated to improving and sustaining care for people with inherited bleeding disorders around the world. "

    "At the WFH, national member organizations (NMOs) and health care professionals (HCPs) work together to provide care for people with inherited bleeding disorders around the world. We partner with governments and hemophilia treatment centers to enhance knowledge through training and provide tools they need to identify, support, and treat people living with bleeding disorders in their communities, while promoting global advocacy and collaboration to achieve our common goals. The WFH is founded upon the following core values and organizational principles: patients first, collaboration, integrity, respect, solidarity and excellence."

  • Sample Organization

    Phone Number: 555-555-5555

    Email: info@sampleorganization.com

    Website: https://www.allthebleedingoptions.com/organizations

    Established: 2026

    What They're About: Created to enrich the bleeding disorder community.

State Chapters

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