Alpha-gal Activists! We need your help! On July 27, 2023,…
The Alpha-gal Syndrome Patient Experience Survey
We’re pleased to announce that TBC United’s Alpha-gal Syndrome Patient Experience Survey was presented today at the American Academy of Allergy, Asthma & Immunology, 2022 Annual Conference, held in Phoenix, AZ!
The AGS Patient Experience survey began in December 2019, and remains open to help document patient trends. This data provides ongoing benefits in the fight for more funding for research, diagnosis & treatment, tick surveillance, and more.
To date, more than 2,000 patients have participated, making this perhaps the largest AGS patient survey to date. The survey results provide valuable insights into the living experience of AGS patients as well as important insights for healthcare providers.
The top three concerns of the AGS patients continue to center around the lack of knowledge of healthcare providers, ingredient labeling, and the need for research funding. These top concerns were mirrored in the federal Tick-Borne Disease Working Group recommendations put forth in the 2020 Alpha-gal Syndrome Subcommittee report, summarized and included in the 2nd Report to Congress. For more information about the various TBDWG reports, please click here.
TBC United Chairwoman and AGS patient, Dr. Tina (Merritt) Meinholz, presented and co-authored the poster with TBC United Cofounder, and Adjunct Professor at Gillings Global School of Public Health, Dr. Jennifer Platt.
This poster has been made available for the more than 7,000 allergists, immunologists and patients that rely on AAAAI for reliable medical resources. We encourage all stakeholders to download the poster to spark conversations, awareness and education in your organization and community. See links below for more details to help support discussions.
Please join us for more discussion on social media, or by emailing us. We welcome the opportunity to speak with your organization for a more in depth discussion regarding Alpha-gal Syndrome, or partnership opportunities.
Our thanks to everyone who played a role in making this happen – most importantly to the AGS patients who participated in the survey!
To view our first AGS white paper, please click here.
To take the Alpha-gal Patient Experience Survey click here.
Beth and Jennifer
Beth Carrison, INHC
CoFounder and Director of Advocacy
Jennifer Platt, DrPH
CoFounder and Director of Programs