what they call their work
what they do
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Young Adult Advocacy & Leadership Training 12 activities
- Advocacy and Education for Bleeding DisordersProvides 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.
- Annual Arizona Blood SummitHosts an annual summit focused on current health topics and strategies to improve wellbeing within the bleeding disorders community.
- Community Education and Support ActivitiesProvides 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 DisordersProvides 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 DisordersProvides 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.
- Leadership Training for Bleeding Disorders CommunityOffers 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 CommunityProvides leadership training and advocacy tools for teens and young adults in the bleeding disorders community through the "AZ Bloodline Leaders" program.
- Support and education programs for bleeding disorders communityProvides ongoing support, education, and community-building activities for individuals and families affected by bleeding disorders, including monthly educational series with experts, parent support meetings, social events, and condition-specific gatherings.
- Support services for individuals with bleeding disordersProvides 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.
- Youth Leadership and Advocacy TrainingOffers 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 developmentOffers leadership training and advocacy skill-building for teens and young adults in the bleeding disorders community through the "AZ Bloodline Leaders" program.
- Youth leadership and advocacy trainingOffers the "AZ Bloodline Leaders" program to provide leadership development and advocacy tools for teens and young adults in the bleeding disorders community.
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Gene Therapy Access Advocacy 5 activities
- Advocacy for Bleeding Disorders CommunityAdvocates 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 TherapiesAdvocates 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 careEngages 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.
- Advocacy for sickle cell disease gene therapiesRecognizes and advocates for improved patient access to newly approved gene therapies for sickle cell disease, such as Casgevy and Lyfgenia, which disproportionately affect African American communities.
- Support for Sickle Cell Disease TreatmentsRecognizes and advocates for Casgevy and Lyfgenia as potential cures for sickle cell disease, a red blood cell disorder that disproportionately affects African Americans.
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Uncategorized 2 activities
- Nursing Care for Students with Bleeding DisordersProvides nursing care to support students' academic and personal growth while managing their health needs related to bleeding disorders.
- State and federal legislative advocacyEngages in advocacy efforts at both state and federal levels, including participation in Legislative Days in Arizona and Washington to advance healthcare policies for individuals with bleeding disorders.
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who runs it
- ANGELA TOM — DIRECTOR
- CINDY HOMAR — DIRECTOR
- CLAUDIO LEDEZMA — DIRECTOR
- GEORGE COPPOCK — DIRECTOR
- JOSHUA SHEAR — DIRECTOR
- LAURA CAPELLO — DIRECTOR
- LORENA FRADEN — DIRECTOR
- MARILY AUGUST — DIRECTOR
- PRESCOTT SAKAI — DIRECTOR
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.