Rethinking Rare Disease Systems for Women

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April 28, 2026 @ 9:00 am - 4:00 pm EDT

The Society for Women’s Health Research (SWHR) is convening a closed-door, interdisciplinary roundtable of experts to examine policy levers and research participation gaps impacting women living with rare diseases. This discussion will focus on how sex- and gender-specific factors shape inclusion in rare disease research, access to evidence-based care, and downstream health outcomes for women.

Details

Organizer

Fostering Care, Support, and Research for Rare Disease Patients

A summary blog of the Rare Disease Roundtable

Objectives

The objectives of the roundtable are to:

  • Review of the rare disease research landscape, including gaps and opportunities
  • Understand how federal policy shapes rare disease landscape and innovation incentives
  • Explore how patients can gain access to earlier diagnosis, emerging treatments, and improved clinical care

Working Group Participants

Fabienne Antoine-Nasser, JD, Director of Policy and Government Affairs, Sick Cells

Holly Jones, President & Chief Executive Officer, HERStory in Color

Annie Kennedy, Chief Mission Officer, EveryLife Foundation

Deborah Krakow, MD, Professor and Chair, Obstetrics and Gynecology; Professor, Orthopedic Surgery, Human Genetics, UCLA California Center for Rare Diseases

Maia Laing, MBA, Health Policy & Innovation Advisor

Karen Mancera-Cuevas, DrPH, MS, MPH, MCHES, Senior Director, Health Equity, National Health Council (NHC)

Heather Radtke, MS, CGC, Director, Clinical Programs, TSC Alliance

Tracey Sikora, Vice President, Research and Clinical Programs, National Organization for Rare Disorders (NORD)

Lilly Stairs, Founder & CEO, Patient Authentic & Chronic Boss

Dionne L. Stalling, Executive Director, Rare and Black

Sponsor

Support for this educational program has been provided by Novartis and Serepta. SWHR maintains independence and editorial control over program development, content, and work products.