2025 Annual Conference
Empowering Rare Lives
Advocacy, Resilience, and Readiness for the Rare Journey
November 1, 2025
Southern New Hampshire University
Manchester, NH
Rare New England (RNE) invites you to take part in a dynamic and impactful conference series designed to deliver crucial information, resources, and support for the rare disease community. Whether you're a patient, caregiver, medical professional, or student, this is your opportunity to connect, learn, and equip yourself with essential tools for advocacy and resilience.
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
Bethany Cottrell
Founder, Planning with Purpose Nonprofit & Public Sector Leader
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
Associate Professor of Pediatrics, Pathology & Laboratory Medicine at the Geisel School of Medicine at Dartmouth-Hitchcock Medical Center & 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
Workshop Facilitator: Dhani Bartolome- MD/MPH Candidate – Class of 2028 University of Arizona College of Medicine – Phoenix
Workshop Facilitator: Misha Samonte- M.D. Class of 2028 University of Arizona College of Medicine - Phoenix
10:45am - 11:45am : Building Support Systems That Last: From Isolation to Community
Moderator: Aishwarya Siddharth, MSc, MMSc, CGC Medical Science Liaison Chiesi GRD, USA
Panelist: Deana Taylor- Outreach Coordinator- NH Family Voices
Panelist: Bethany Cottrell- Planning with Purpose Nonprofit & Public Sector Leader
Panelist: Sean Riley- Rare Disease Advocate, Amyloidosis Patient Speaker
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
Workshop Facilitator: Mary Beth Dinulos, MD, FACMG Associate Professor of Pediatrics, Pathology & Laboratory Medicine at the Geisel School of Medicine at Dartmouth-Hitchcock Medical Center & Chair of the New Hampshire Rare Disease Advisory Council
1:00pm : Closing Remarks
Your support helps makes these conferences possible.
Thank you to our sponsors!
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