American Behcet's Disease Association (ABDA)
Support-Education-Advocacy-Research
Programs and results
What we aim to solve
The ABDA works to provide better outcomes for the Behcet's community by engaging patients, families, caregivers healthcare professionals, industry and government with the purpose of achieving dramatic improvement in the lives of patients and caregivers. We work for a better tomorrow and to improve the quality of life of Behcet's patients.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Support & Education
Through the ABDA website www.behcets.com, newsletter, information packets, Behcet's hotline (1-800-723-4238 or (1-8007-behcet) and conferences and symposia, the organization educates its members, healthcare professionals and the public about Behcet's Disease. The educational materials provide the most current information about signs, symptoms, treatment and research. Literature may be requested via our website at www.behcets.com
Awareness
ABDA members help raise awareness. Members assist the ABDA by distributing information to medical offices, dental offices, hospitals, and the community. The organization distributes literature by mail and in person. May is Behcet's Awareness month and May 20th is International Behcet's Awareness Day. Many activities are planned during the month of May to increase awareness of Behcet's Disease. The ABDA participates in events during Rare Disease Day on February 28 of every year. We attend Congressional visits, In-District Lobby Days, and conferences at the National Institutes of Health (NIH). The organization exhibits at the American College of Rheumatology (ACR) and at the American Association of Dental Research (AADR). The ABDA collaborates with other rare disease coalitions, interacts with medical offices, schools, educational and social events at health fairs, walk/runs, dinners, and patient events. We work closely with AARDA on the "Let My Doctor Decide" initiative.
Advocacy
When Members of Congress meet advocates and real patients doing real things, the impact on policies and laws can be profound, particularly to those affected by a rare disease such as Behcet's Disease. The ABDA advocates for better access to care, better diagnostic tests, more research and for better treatment and development of orphan drugs for rare diseases, autoimmune, and autoinflammatory diseases which include Behcet's Disease.
Research
The American Behcet's Disease Association promotes research and works closely with various institutions to help advance clinical trials in order to find effective treatment of the disease.
Where we work
External reviews

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Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
Our organization aims to educate the public and healthcare professionals about Behcet's Disease. The goal is to empower the Behcet's community and to raise awareness of the disease, as well as to advocate for better diagnostic tools, better treatments and a possible cure.
What are the organization's key strategies for making this happen?
The strategy is to have a strong presence nationwide, at a state and national level, in order to continue advocacy efforts; to participate in coalitions and work with other rare disease, autoimmune and autoinflammatory groups to consolidate the voice of the Behcet's community by promoting increased education, awareness, and research into all aspects of the disease.
What are the organization's capabilities for doing this?
Through member participation and the work of the ABDA board and staff, we are able to carry out the mission of support, education, advocacy and research. We are grateful to the Behcet's community for their generosity and constant support, as our organization relies solely on donations.
What have they accomplished so far and what's next?
We are proud to have worked tirelessly to be a part of making progress through the 21st Century Cures Act. The first FDA approved treatment for oral ulcers of Behcet's Disease in adult patients in the United States is in the horizon, as the clinical trial is in phase 3 and the drug may receive approval at the end of July, 2019. We are closely working on a clinical research study of biomarkers of Behcet's Disease. Our organization has been instrumental in helping raise awareness of rare and orphan diseases, orphan treatments and in the recruitment process for clinical research and clinical trials.
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
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Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
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- Compare nonprofit financials to similar organizations
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American Behcet's Disease Association (ABDA)
Board of directorsas of 07/24/2021
Deb Kleber-Struzyna
American Behcet's Disease Association
Term: 2019 - 2022
Belinda Rivas
American Behcet's Disease Association
Term: 2019 - 2022
Deb Kleber-Struzyna
Belinda Rivas
Franco Barrientos
Marcia Wise
Jennifer Cumming
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
The organization's co-leader identifies as:
Race & ethnicity
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Gender identity
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Sexual orientation
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Disability
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