ABDA's Mission

The ABDA supports, educates and empowers the Behcet’s community while continuously advocating for better research, diagnostics, treatment and a cure.

Get to know our mission

What Drives Us

The ABDA's efforts aim to affect change, actively work on proposals to protect and improve key policies at local, state and federal levels, and ultimately improve patient outcomes and quality of life. Addressing issues such as access to care, treatment innovations, research and healthcare policies, the voice of those affected by Behcet's Disease and rare diseases is of utmost importance.

American Behcet's Disease Association
MISSION
Support * Education * Advocacy * Research
To support, educate, and empower the Behcet's community, while advocating for better research, diagnostics, treatment, and a cure.
Support
Education
Advocacy
Research
Direct people to reliable sources of information, including emotional and social wellbeing.

Improve connections across the global Behcet's community.

Reduce the feeling of isolation.
Educate patients how to (a) achieve effective and collaborative patient-centered care, (b) advocate for themselves with their care team, and (c) adhere to better treatment plans.

Educate health care professionals on the latest Behcet's diagnostic criteria, research, and treatments.

Educate legislators and the general public on the impact of living with a rare disease.
Improve US laws which affect the rare disease community, including insurance coverage, prior authorization laws, Medicare/Medicaid, drug pricing, and access to treatments.

End step-therapy nationwide.
Provide information on Behcet's-related clinical trials and research; encourage patients to discuss participation with their care team.

Encourage Behcet's patient participation in non-proprietary, sustainable, and secure natural history databases.
where we started

History

Originally known as the American Behcet's Foundation, the organization was established in 1978 in Orange County, CA, by Sheila Gregory, the mother of a young Behcet's patient. The name of the organization has changed throughout the years, but its mission of support, education, advocacy and research continues. In 1986 the organization was moved to Rochester, MN. In 1987, it was incorporated as a nonprofit organization under the name of American Behcet's Association (ABA). The Medical Advisory Board was established in 1988. The Internal Revenue Service granted 501(c)3 nonprofit status to the ABA in 1989. The name was changed to American Behcet's Disease Association (ABDA) in 1989, with the purpose of clarifying the nature and mission of the organization.

Presently, the ABDA business office is located in Rochester, Michigan. Our Correspondence and Database Coordinator is located in New York and volunteer Executive Board members and Behcet's community members are scattered throughout the country.

ABDA's tax returns can be accessed on Guidestar.

ABDA Board of Directors

Katrina Duarte*
Paige Munson*
Ashley Pelletier*
Belinda Rivas*
Mirta A. Santos
(ABDA Executive Director)
Deb Kleber Struzyna*
Marcia Wise*

*Indicates Board Members/Officers who are volunteers

ABDA Staff

Mirta Avila Santos, MD
Executive Director
Maria Giannitelli
Database Coordinator & Correspondence Secretary
Susan Bado
Bookkeeper

ABDA Volunteers

Sandra McElgunn
Hotline Coordinator & Operator
Jennifer Cordova
Social Media
Franco Barrientos, MD
Medical Liaison
Joanne Zeis
Manager, Publicatios & Patient Surveys

Medical Advisory Board

Jorge Bordenave, MD
DirectorCardiology and Integrative Medicine
David P. Fivenson, MD
Director, Fivenson Dermatology PLLC
Johannes Nowatzky, MD, FACR
The Center for Musculoskeletal Care, NYU Hospital for Joint Diseases, Behcet's Syndrome Center
Rae Scimecca Pietrzak, MD
Retired from Pediatrics, Chicago, IL
Delfin Santos, MD, FACR
Director, AARA Rochester Rheumatology
Andrew Sulich, MD, FACR
Shores Rheumatology
Jose Vazquez, MD, FACP, FIDSA
Chief & Professor, Section of Infectious Diseases Georgia Regents University
Yusuf Yazici, MD, FACR
The Center for Musculoskeletal Care, NYU Hospital for Joint Diseases

ABDA Code of Conduct

The American Behcet’s Disease Association (ABDA) is a non-profit 501(c) 3 charity. As volunteers and contractors, we are responsible for adding value to ABDA and contributing to the ethical success of this organization. We accept responsibility for our individual decisions and actions. We also advocate by engaging in activities that enhance the ABDA’s credibility and value. The volunteers and contractors are responsible for adhering to the following:

  • Strive to meet the highest standards of competence and commit to strengthen our competencies on a continuous basis.
  • Build respect, credibility and strategic importance within our organization, the business community, and the communities in which we work.
  • Assist the ABDA’s Board of Directors in achieving its objectives and goals.
  • Inform and educate current and future partners, the organizations we serve, and the general public about our principles and practices.
  • Encourage decision-making and responsibility.
  • Encourage social responsibility.
  • Adhere to the highest standards of ethical and professional behavior.
  • Measure the effectiveness of our programs in contributing to or achieving the Association’s goals.
  • Comply with the law.
  • Strive to achieve the highest levels of service, performance and social responsibility.
  • Advocate for the appropriate appreciation.
  • Expand knowledge of our job duties which enables further understanding of how the ABDA functions.
  • Contribute to the body of knowledge, and the growth of individuals through teaching, research and sharing of knowledge.
  • Individual leadership as a role model for maintaining the highest standards of ethical conduct.
  • Be ethical; act ethically in every professional interaction.
  • Promote and foster fairness and justice for everyone.
  • Treat everyone with dignity, respect and compassion in an effort to foster a trusting work environment free of harassment, intimidation, and unlawful discrimination.
  • Ensure everyone has the opportunity to develop their skills.
  • Regardless of personal interests, support ethical and legal decisions made by the ABDA.
  • Act in a responsible manner, and practice sound business practices in the areas where the organizations we partner with operate.
  • Avoid activities that may be in conflict, or may appear to be in conflict, with any of the provisions of ABDA’s Code of Ethics or with one’s responsibilities and duties.
  • Consider and protect the rights of individuals, especially in the acquisition and dissemination of information, while ensuring truthful communications and facilitating informed decision-making.
  • Build trust among all organizations by maximizing the open exchange of information.

*This Code of Conduct is based on recommendations from Board Source.

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