RNE Annual Conference 2025

Southern New Hampshire University

Meet Our Speakers

Workshop

My Rare Story, My Way
Advocacy Through Personal Narrative

Dhani Bartolome
MD/MPH Candidate – Class of 2028 University of Arizona College of Medicine – Phoenix

Misha Samonte
M.D. Class of 2028 - University of Arizona College of Medicine – Phoenix

Panel

Building Support Systems that Last
From Isolation to Community

Moderator

Aishwarya Siddharth, MSc, MMSc, CGC

Medical Science Liaison - Chiesi GRD, USA

Deana Taylor
Outreach Coordinator - NH Family Voices

Sean Riley
Rare Disease Advocate Amyloidosis Patient

Workshop

Getting Involved
Navigating Your State’s Rare Disease Advisory Council for Meaningful Change

Mary Beth Dinulos, MD, FACMG
New Hampshire Rare Disease Advisory Council - Chair

CONFERENCE AGENDA

9:30am - 9:45am : Registration

9:45am - 10:00am : Welcome & Opening Remarks

10:00am - 10:45am : My Rare Story, My Way: Advocacy Through Personal Narrative

10:45am - 11:45am : Building Support Systems That Last: From Isolation to Community

11:45am - 12:15pm : Exhibitor Showcase/Light snacks & refreshments

12:15pm - 1:00pm : Getting Involved: Navigating Your State’s Rare Disease Advisory Council for Meaningful Change

1:00pm : Closing Remarks

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