In honor of Rare Disease Day, our Executive Director and a fellow Board Member attended Rare Disease Week on Capitol Hill alongside advocates from across the country to meet with Members of Congress and make their voices heard. They discussed policy proposals impacting the rare disease community, urged them to protect funding for public health so that rare disease patients can continue to benefit from lifesaving research, urged them to join the Rare Disease Congressional Caucus, and shared the struggles patients with Behçet's disease face.
In addition to the meetings with Congress, they also attended a legislative meeting which included a deep-dive into policy proposals affecting the rare disease community, hearing from experts in the space to stay abreast on key issues, and were able to listen to many other fierce advocates share their stories from around the country.
In collaboration with the National Organization for Rare Disorders (NORD®), held in honor of Rare Disease Day®, a team of Harvard undergraduate students hosted the 2025 Harvard Rare Disease Hackathon with the goal of bringing together brilliant minds to explore computational solutions for rare diseases, leveraging the power of open science and genomic data.
At the hackathon, post-secondary school students had the opportunity to interact with inspiring patients, caregivers, physicians, and scientists involved in rare disease areas. Hackathon participants were challenged to produce solutions of direct benefit to patients in these communities, with the eventual goal of scaling their solutions to better support rare disease patients.
Thank you to the Harvard University student's for organizing and for allowing our Executive Director, Ashley Pelletier, to participate in the patient and caregiver lightning talks highlighting personal experiences and challenges faced by patients living with Behcet’s Disease, providing a human perspective on the problems participants are aiming to solve.
Although Angie has volunteered for the ABDA for two years now, please join us in celebrating Angie for joining the ABDA Board! Angie is joining the ABDA Board of Directors from Golden, Colorado. She has a vast array of hobbies, many of which are outdoor-oriented, likely due to her upbringing in Montana. Angie is an avid runner and cyclist, and she enjoys hiking, backpacking, skiing, snowshoeing, weightlifting, and gardening. Angie’s indoor hobbies include sewing, painting, playing the flute, and learning French.
Professionally, Angie is an immunologist with over 18 years of research experience, most recently as the Scientific Strategy Manager for the Lupus Nexus initiative of the Lupus Research Alliance. As a Postdoctoral Fellow, she oversaw several research projects focused on type 1 (autoimmune) diabetes, and her PhD thesis involved research on sarcoidosis, a rare inflammatory disease. She has served as Managing Editor, Executive Editor, and ultimately the Editor-in-Chief of the Journal of Life Sciences, where she managed all aspects of the peer-reviewed journal, including publication of the journal, career development and recognition awards, and training in peer review. Angie holds a PhD in Immunology from the University of Colorado, an MS in Immunology and Infectious Diseases from Montana State University, and a BS in Cell Biology and Neuroscience with a minor in Microbiology from Montana State University. Her skillset includes scientific presentations, public speaking, scientific writing, peer review, data analysis and management, strategic planning, and a variety of laboratory techniques. Angie has published 15 peer-reviewed manuscripts and has received numerous awards and recognition for her work, including grants, abstract and poster awards, and visiting scientist positions.
She eagerly anticipates applying her expertise to further the scientific initiatives of the ABDA, ultimately benefiting individuals (like herself) that are living with Behçet’s Disease.
Interested in planning an event for the ABDA or have an idea/topic you would like discussed? Please email abdaevents@behcets.com
International Behçet's Awareness Day is on May 20th and the month of May is recognized as International Behçet's Awareness Month. Look out for awareness campaigns, patient and caregiver stories, educational content, and advocacy opportunities on our social media channels, via email, and on our website!
Looking to share your story to be featured on our social media? Email your story with Behçet's Disease as a patient or caregiver to ekuhn@behcets.com for a chance to be featured in one of our upcoming posts.
Rare Disease Legislative Advocates (RDLA) is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. RDLA believes that every voice matters and that patients are the key to changing public policy. To learn more about getting involved in advocacy with the RDLA click here.
NORD has a resource library for patients, caregivers, physicians, advocates, researchers, patient organizations, and more! You can view their resource library here.
The Rare Action Network® (RAN) is the nation’s leading advocacy network working to improve the lives of the 30 million Americans living with a rare disease at the state level. RAN serves as a broad spectrum of stakeholders ranging from patients, to their families, caregivers, and friends; from researchers to industry; to physicians and academia. While working predominantly at the state level, the network will filter information up to NORD’s national federal policy team to help address issues of national concern
Members of the Rare Action Network® are part of 30+ million person community working towards improving the lives of patients with rare diseases. This expansive network enables you to:
As Autoimmune Awareness Month comes to a close, we're happy to spotlight the Autoimmune Association and all their hard work they have put into advocating for the millions of individuals living with an autoimmune disease.
Last week, Representative Haley Stevens of Michigan's 11th District introduced House Resolution 225, officially declaring March as Autoimmune Awareness Month. This recognition from the federal government is a powerful step forward in raising awareness for the 50 million Americans living with autoimmune diseases.
Why does this matter? Because awareness drives understanding — and understanding fuels better research, treatments, and support. When autoimmune disease is recognized as a serious public health issue, we get closer to the answers and resources patients need. Read the full resolution: here.
You have the power to make a difference and improve the lives of those living with autoimmune disease. Together we are stronger, and we want you to be part of that. Click here to learn about opportunities for individuals to get involved!
Mark your calendars! The ABDA’s Virtual Summit 2025 is happening on May 17th & 18th from 12-4 PM ET, bringing together expert speakers, patient and caregiver panels, live Q&A sessions, and more!
This two-day event is a unique opportunity to connect, learn, and engage with the Behçet’s community—all from the comfort of your home.
Dates: May 17 & 18, 2025
Time: 12 PM - 4 PM ET
Location: Online (Virtual Event)
Stay tuned for registration details and the full agenda. We can’t wait to see you there!
Please reach out to info@behcets.com with any questions regarding the summit, and visit www.behcets.com to learn more about the ABDA.
