activities · 14
what they do
direct service · 5
- Community Education and Support Activities Bleeding Disorders Community Support & LeadershipProvides monthly educational series in partnership with organizations and experts, and hosts regular monthly activities for families, teens, parents, and specific bleeding disorder groups, including social events, advocacy training, and parent support meetings.
- Education and Community Events for Bleeding Disorders Bleeding Disorders Community Support & LeadershipProvides education and hosts community events for Arizonans living with bleeding disorders, including von Willebrand disease and hemophilia, through monthly educational series and an annual "Arizona Blood Summit."
- Education and Community Events for Bleeding Disorders Bleeding Disorders Community Support & LeadershipProvides education, community events, and ongoing programs for Arizonans living with bleeding disorders, including von Willebrand disease and hemophilia. This includes monthly educational series, an annual "Arizona Blood Summit," and regular activities for families, teens, and specific bleeding disorder groups.
- Nursing Care for Students with Bleeding Disorders Bleeding Disorders Community Support & LeadershipProvides nursing care to support students' academic and personal growth while managing their health needs related to bleeding disorders.
- Support services for individuals with bleeding disorders Bleeding Disorders Community Support & LeadershipProvides ongoing programs, including social events, support meetings, and community activities for families, teens, parents, and specific bleeding disorder groups across Arizona. Services are delivered through the Arizona Hemophilia Foundation and include nursing care support for students managing health needs.
advocacy · 5
- Advocacy and Education for Bleeding Disorders Bleeding Disorders Community Support & LeadershipProvides advocacy, education, and community events for Arizonans living with von Willebrand disease and hemophilia. This includes participating in legislative days and hosting an annual Arizona Blood Summit to discuss health strategies.
- Advocacy for Bleeding Disorders Community Sickle Cell Disease Gene Therapy AccessAdvocates for individuals living with bleeding disorders, including participating in legislative days and promoting improved patient access to gene therapies for sickle cell disease.
- Advocacy for Sickle Cell Disease Gene Therapies Sickle Cell Disease Gene Therapy AccessAdvocates for improved patient access to newly approved gene therapies (Casgevy and Lyfgenia) for sickle cell disease, a red blood cell disorder that disproportionately affects African Americans.
- Advocacy for bleeding disorders and access to care Sickle Cell Disease Gene Therapy AccessEngages in state and federal advocacy efforts, including participation in Legislative Days in Arizona and Washington, with a focus on improving patient access to emerging treatments such as gene therapies for sickle cell disease. Recognizes Casgevy and Lyfgenia as breakthrough therapies and advocates for equitable access.
- Support for Sickle Cell Disease Treatments Sickle Cell Disease Gene Therapy AccessRecognizes and advocates for Casgevy and Lyfgenia as potential cures for sickle cell disease, a red blood cell disorder that disproportionately affects African Americans.
capacity building · 4
- Leadership Training for Bleeding Disorders Community Bleeding Disorders Community Support & LeadershipProvides leadership training and advocacy tools for teens and young adults in the bleeding disorders community through the "AZ Bloodline Leaders" program.
- Leadership Training for Bleeding Disorders Community Bleeding Disorders Community Support & LeadershipOffers leadership training and advocacy tools for teens and young adults in the bleeding disorders community through the "AZ Bloodline Leaders" program.
- Youth Leadership and Advocacy Training Bleeding Disorders Community Support & LeadershipOffers leadership training and advocacy tools for teens and young adults in the bleeding disorders community through the "AZ Bloodline Leaders" program, and hosts regular activities for families, teens, and specific bleeding disorder groups.
- Youth leadership and advocacy training Bleeding Disorders Community Support & LeadershipOffers the "AZ Bloodline Leaders" program to provide leadership development and advocacy tools for teens and young adults in the bleeding disorders community.
strategies · 13
how they think
Theories of action extracted from this org's own source material. Click any to see the full field of orgs running the same approach.
- Advocacy and Education for Patient Empowerment and Access patient_advocacy_and_empowermentThe organization uses advocacy, education, and community engagement to empower individuals with inherited blood conditions, enabling them to have a voice, advocate for relevant legislation, manage their care, and improve access to appropriate, affordable, and integrated treatments and services, including behavioral health.
- Advocacy and Empowerment for Inherited Blood Conditions advocacy_and_empowermentThe organization uses advocacy, education, and community engagement to empower individuals with inherited blood conditions, ensuring they have a voice, access to advanced treatments, and can advocate for relevant legislation and manage their own care. This approach aims to improve patient access to appropriate, affordable, and culturally-informed care, including behavioral health services, and ultimately enhance life opportunities and quality of life.
- Advocacy for improved access and health equity health_equity_advocacyThe organization uses advocacy to improve patient access to advanced treatments, ensure appropriate, affordable, and culturally-informed care, and advance health equity for individuals with inherited blood conditions. This includes advocating for relevant legislation and empowering patients to have a voice.
- Advocacy, education, and community engagement to support individuals with inherited blood disorders advocacy-education-community_eventsUses integrated advocacy, education, and community-building efforts to increase life-enhancing opportunities for individuals with inherited blood conditions by fostering awareness, improving care access, and strengthening community support networks.
- Community Building and Support community_buildingThe organization fosters a supportive community environment for individuals and families affected by inherited blood conditions through community events, networking, and increasing community-based support services. This approach aims to create alliances and provide mutual support among those facing similar challenges.
- Community Building and Support Networks community_buildingThe organization fosters community among individuals and families affected by inherited blood conditions by facilitating networking and increasing community-based support services to create a supportive alliance.
- Community building and support community_building_and_supportThe organization fosters a supportive community environment through events, networking, and community-based services to increase life-enhancing opportunities and provide a sense of alliance for individuals and families affected by inherited blood conditions.
- Community-based support through lived experience and family networking lived_experience_engagementStrengthens community support by connecting families and engaging individuals with lived experience of bleeding disorders, fostering peer networks and using personal insights to inform organizational programs and advocacy.
- Education for empowerment and wellness patient_and_family_educationThe organization provides education to empower individuals and families to manage their care, advocate for themselves, and promote overall wellness and prevention related to inherited blood conditions.
- Health equity and access advocacy for culturally-informed, integrated care health_equity_advocacyAdvocates for equitable access to affordable, patient-centered, and culturally-informed care, including integrated behavioral health services, to improve outcomes for Arizonans with bleeding and inherited blood disorders.
- Patient and family empowerment through education and advocacy training patient_and_family_education_for_advocacyEmpowers patients and families with inherited blood disorders to manage their care and advocate for policy changes by providing education and tools that build self-advocacy skills and engagement in legislative processes.
- Wellness and Prevention Education wellness_and_prevention_educationThe organization promotes overall wellness and prevention among individuals with inherited blood conditions through targeted educational initiatives.
- Wellness and prevention through targeted education wellness_and_prevention_educationPromotes long-term health and disease management by delivering education focused on wellness and preventive care for individuals with inherited blood conditions.
named programs · 4
what they call their work
AZ Bloodline Leaders
Leadership and advocacy training program for teens and young adults in the bleeding disorders community to develop skills and connect with peers
Arizona Blood Summit
Annual educational event focusing on current topics in bleeding disorders, offering strategies to improve health and wellbeing
Educational Series
Monthly educational sessions in partnership with experts and organizations to provide ongoing learning for the blood disorders community
Monthly Activities
Regular community events for families, teens, parents, and specific disorder groups, including social gatherings, support meetings, and outdoor activities
relationships · 9
who they work with
- Arizona Hemophilia Association Partner — Steven Fraden worked at the Arizona Hemophilia Association for a few years, building relationships within the community.
- Arizona Hemophilia Foundation Partner — Arizona Hemophilia Foundation is a subsidiary of Arizona Blood Alliance focused on serving individuals with hemophilia.
- Arizona von Willebrand Foundation Network — Subsidiary of Arizona Blood Alliance focused on von Willebrand disease.
- Camp Honor Partner — Steven Fraden volunteered at Camp Honor.
- Crispr Therapeutics Partner — References Crispr Therapeutics as a manufacturer of Casgevy, a CRISPR-based treatment for sickle cell disease.
- Mesa Chamber of Commerce Partner — Organization of which TJ Randt is a current member, indicating a connection to Arizona Blood Alliance through board membership
- Sparta Wealth Partners Partner — Organization where TJ Randt serves as Senior Advisor and which is affiliated through board membership with Arizona Blood Alliance
- Vertex Pharmaceuticals Partner — References Vertex Pharmaceuticals as a manufacturer of Casgevy, a CRISPR-based treatment for sickle cell disease.
- bluebird bio Partner — References bluebird bio as a manufacturer of Lyfgenia, a gene therapy for sickle cell disease.