Disease, Disorders, Medical Disciplines

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

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EIN

41-1579632

Cause area (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
General/Unspecified

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
General/Unspecified

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
General/Unspecified

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
General/Unspecified

Where we work

Charting impact

SOURCE: Self-reported by organization

Five 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.

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.

Once Behcet's patients have access to better diagnostic tools, and to the treatment they desperately need we will know we've made significant progress. In other areas, we measure progress via the support we receive from our community and through engagement and interaction through our website, through literature requests and distribution, and through participation of our community via social media channels and metrics.

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 7/31/2019
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

Mary Burke

Keywords

Support, education, advocacy, research, Behcet's, Behcet's Disease, BD, Silk Road, Silk Route, Behcet's Syndrome