ABDA's Mission

What is Advocacy?

Rare disease advocacy 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 to the ABDA.

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 Feasterville, Pennsylvania. 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

Deb Kleber Struzyna

‍

Quardricos Driskell

ABDA Staff

Ashley Pelletier

Executive
Director

Maria Giannitelli

Database &
Correspondence Coordinator

Mary Ellen Mansfield

Bookkeeper

ABDA Volunteers

Emma Kuhn

Social Media Coordinator

Jennifer Cordova

Hotline Coordinator and Operator

Joanne Zeis

Manager, Publications & Patient Surveys

Marcia Wise

Executive Secretary

Volunteer

Angie Mitchell

Medical Advisory Board

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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