American Behcet's Disease Association (ABDA)

Support-Education-Advocacy-Research

aka ABDA   |   Rochester, MI   |  www.behcets.com

Mission

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

Ruling year info

1993

President

Deb Kleber Struzyna

Executive Director

Dr. Mirta Avila Santos

Main address

PO Box 80576

Rochester, MI 48308 USA

Show more contact info

EIN

41-1579632

NTEE code info

Professional Societies, Associations (G03)

Professional Societies, Associations (P03)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

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

Population(s) Served
Adults

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.

Population(s) Served
Adults

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.

Population(s) Served
Adults

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.

Population(s) Served
Adults

Where we work

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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.

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.

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.

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

American Behcet's Disease Association (ABDA)
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Operations

The people, governance practices, and partners that make the organization tick.

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American Behcet's Disease Association (ABDA)

Board of directors
as of 7/24/2021
SOURCE: Self-reported by organization
Board co-chair

Deb Kleber-Struzyna

American Behcet's Disease Association

Term: 2019 - 2022


Board co-chair

Belinda Rivas

American Behcet's Disease Association

Term: 2019 - 2022

Deb Kleber-Struzyna

Belinda Rivas

Franco Barrientos

Marcia Wise

Jennifer Cumming

Organizational demographics

SOURCE: Self-reported; last updated 07/24/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female
Sexual orientation
Decline to state
Disability status
Decline to state

The organization's co-leader identifies as:

Race & ethnicity
Hispanic/Latino/Latina/Latinx
Gender identity
Female
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data