Lyme Society, Inc is entering a challenging and exciting time, as the 21st Century Cures Act comes into action. The 21st Century Cures Act requires the HHS to form a “Tick-borne Disease Working Group” comprised of representatives of federal agencies, physicians and researchers, as well as patients, their family members and organizations that advocate on patients’ behalf.
The spread of Lyme and other tick-borne disease in the United Sates is undeniable, and reinforces the immediate need for accurate diagnostic tools, comprehensive treatment guidelines, wide sweeping educational efforts, better data collection, and subsequent research. Lyme Society, Inc is committed to fostering measurable steps that will affect how Lyme and other tick-borne diseases are diagnosed and treated within our Country.
We pride ourselves on being welcoming to all ideas, and supporting the Lyme community as a whole as we learn and grow as a society. Our ultimate mission is to ensure that the society of patients with Lyme disease is fully represented as our country moves forward in making positive changes for tick-borne disease.
Lyme Society, Inc, an approved New York State non-profit, was founded by Mr. Robert “Bob” Sabatino a retired NYC police officer who himself suffered over 10 years before receiving a proper diagnosis of Lyme disease and other co-infections. Mr. Sabatino started telling his story publicly in 2016, and quickly caught the attention of several local and state legislators giving him access to many open conversations about changes that would benefit the 100’s of thousands of patients with Lyme disease in our country. Since then Bob has gained the public support of many officials who have made a commitment to helping foster change for the society of people who live with Lyme disease.
We have five basic education and advocacy goals:
- Spread awareness of the risks of tick-borne diseases through education.
- Support the relationship between patients and the federal representatives, physicians, researchers, and patient advocacy organizations through advocacy.
- Encourage for the development of a single rapid-test for all species of Borrelia (the bacteria that causes Lyme and Lyme-like illnesses) and a standardized blood panel which tests for the most common tick-borne diseases in the U.S.
- Foster the development of updated guidelines for the treatment of Lyme and tick-borne diseases at the state and federal level.
- Ensure that the patients perspective is represented with each of the above goals.