Rare Disease Day

Diagnose Earlier, Treat Smarter: Innovations in Rare Disease Patient Care

Overview and Target Audience

Join us as we come together to raise awareness of rare diseases through education, networking, and advocacy. This event aims to inspire UB students, faculty and staff, and our community partners to recognize what it means to care for rare.

Hosts:

  •  Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo 
  • UB School of Pharmacy and Pharmaceutical Sciences
Event Details
  • Feb. 27, 2026
  • 1–5 p.m. ET
  • Jacobs School of Medicine and Biomedical Sciences, Second Floor

Agenda

Time Topic Speakers
1–2:15 p.m. Session A: "Opportunities and Updates in Research and Diagnostics"
  • Mitochondrial Disorders and the Broader Challenges of Rare Disease Research
    • Jesse Slone, PhD, Assistant Professor, Department of Pediatrics, Jacobs School of Medicine and Biomedical Sciences
  • Lecture topic: Opportunities and Expansion of Genetic Testing
    • Justin Wilbur, MS, CGC, Clinical Assistant Professor, Jacobs School of Medicine and Biomedical Sciences
  • Lecture topic: FOXG1 Research from Bench to Clinical Trial
    • Soo-Kyung Lee, PhD, Empire Innovation Professor, Om P. Bahl Endowed Professor, Department of Biological Sciences; Director – FOXG1 Research Center; University at Buffalo
    • Gai Ayalon, PhD, Chief Drug Development Officer – FOXG1 Research Foundation
    • Ryan Philips, Parent, Chief Financial Officer – FOXG1 Research Foundation
2:15–3:30 p.m.

Networking Break and Poster Session

Light refreshments provided and prizes available!

Poster Session

Advocacy Tables

3:30–5 p.m.
Session B: "Advancements in Treatment of Rare Disease"
  • Tiny Fighters, Tremendous Progress: Advancements in the Treatment of Pediatric Leukemia
    • Marissa Krieger, PharmD, BCPPS Clinical Pharmacy Specialist, Roswell Park Comprehensive Cancer Center
  • Cystic Fibrosis: Exciting Advances from a Parent and Provider Perspective
    • Danielle Goetz, MD Clinical Assistant Professor, Department of Pediatrics, Jacobs School of Medicine and Biomedical Sciences
    • Sara Gartland, Parent
  • Lecture topic: Susac Syndrome
    • Norah Lincoff, MD UBMD Neurology + Patient

Poster Submission

To reserve your spot, submit your poster title, author(s) and abstract (<300 words) when you register for the event.

Easel space is limited! Please email Meagan Hutchinson with questions about posters, meaganco@buffalo.edu.

Download Previous Poster Abstracts

Questions?

For general event questions, contact Lindsey Alico Ecker, lmalico@buffalo.edu