Rare Can Be Anywhere

"Alone we are rare, together we are strong"

NORD Rare Disease Day poster that says "Show Your Stipes on Rare Disease Day February 28, 2025".

Overview

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.

Event Details

Date

Feb. 28, 2025

Time

1 - 5 p.m. ET

Location

Jacobs School of Medicine and Biomedical Sciences, 2nd Floor

Hosts

  •  Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo
  • UB School of Pharmacy and Pharmaceutical Sciences
Important Dates

Register by Feb. 21

Poster submissions are due by Feb. 18

Register Now

Agenda

Time Title Learning Objectives Speakers
1–2:15 p.m. “Think Rare, Act Early: Transforming Lives Through Timely Diagnosis”

1. Describe the importance of community connections in providing support to patients and caregivers navigating a rare diagnosis


2. Recognize the role of patient advocacy groups in bridging the gap between patients needs and provider support


3. Identify three reliable, evidence-based resources to consult when encountering a new rare disease diagnosis
  • Justin Hopkin, MD
  • Anne Marie and Blake Davis with Mark Hicar, MD, PhD
  • Nicholas Silvestri, MD
2:15–3:30 p.m.

Networking and Poster Session

Light refreshments provided!

Please consider presenting your work during our poster session. All research topics related to rare disease are welcome. Resharing previously presented posters is encouraged.
 
3:30–5 p.m.
 “Educating Patients and Providers: How Can Resources And Referrals Be Empowering?”

1. Describe the importance of community connections in providing support to patients and caregivers navigating a rare diagnosis


2. Recognize the role of patient advocacy groups in bridging the gap between patients needs and provider support


3. Identify three reliable, evidence-based resources to consult when encountering a new rare disease diagnosis
  • Amanda Rossi, Esq
  • Heather Link, MD
  • Margaret McGlynn, RPh
  • Mary Riedy, PharmD

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.

Accreditation

The Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo is accredited by the ACCME to provide continuing medical education for physicians.

Certification

The Jacobs School of Medicine and Biomedical Sciences designates this live activity for a maximum of 2.5 AMA PRA Category 1 Credit(s)TM. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

The University at Buffalo School of Pharmacy and Pharmaceutical Sciences is accredited by the Accreditation Council for Pharmacy Education as a provider of continuing pharmacy education. This program has been accredited as a knowledge-based activity. Participants must attend the live activity and complete the activity evaluation to obtain continuing education credit. Credit will be uploaded directly to CPE Monitor. No partial credit is available.

  • Session A: ACPE# 0044-0000-25-008-L01-P, 1.25 contact hour, 0.125 CEU
  • Session B: ACPE# 0044-0000-25-009-L01-P, 1.25 contact hour, 0.125 CEU

Questions?

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