Kick off the day with breakfast and a chance to connect with fellow rare disease patients, families, and caregivers.

Pamela Gavin, CEO of the National Organization for Rare Disorders (NORD), opens the day with a warm welcome and event overview.

The day will start with Henry “Hank” Heren sharing his impactful story on how he navigates his journey with Histiocytic Sarcoma.

Speaker:

Henry “Hank” Heren, Retired, Veteran, Professional Trial Patient, Rare Disease Advocate

Moderator: Pamela Gavin, CEO, NORD

Speakers:

• Donald Basel, MD, Medical Director, Genetics Center; Co-Program Director, Neurofibromatosis and RASopathy; Professor and Section Chief, Pediatrics (Genetics), Medical College of Wisconsin/Children’s Wisconsin
• Brett Bordini, MD, Associate Professor, Pediatric Hospital Medicine, Medical College of Wisconsin/Children’s Wisconsin
• April Hall, PhD, MS, CGC, Assistant Professor and Genetic Counselor, Department of Pediatrics, Division of Genetics and Metabolism, Center for Precision Medicine at the University of Wisconsin
• M. Stephen Meyn, MD, PhD, Professor, Medical Genetics and Genomics Residency Director; Co-Director of the UW NORD Center of Excellence for Rare Diseases, University of Wisconsin
• Mike Muriello, MD, Associate Professor, Clinical Genetics and Genomics, Pediatrics, Medical College of Wisconsin/Children’s Wisconsin

Living with a rare disease can be profoundly isolating. This session provides actionable, real-world tools for patients and caregivers to break through isolation and build a reliable, supportive community.

Moderator: Elizabeth Kellom, MS, CGC, Genetic Counselor at The Waisman Center & UW Health Ophthalmology

Speakers:

• Niki Grossheim, BS, Rare Patient Living with Myasthenia Gravis, Advocate, MG Wisconsin Support Group Leader, Member MG Holistic Society
• Lani Knutson, Rare Mom and Caregiver; Legislative Advocacy Team, Cure CMD; Board Member, Wisconsin Rare Disease Alliance
• Stacey Walthers Naffah, Rare Mom & Caregiver, Chair of the Foundation Board of Children’s Wisconsin
• John Darrin Washburn, Lifelong Learner and Educator

Speakers:

• Darby Gavin, MS, Senior Community Engagement Manager, NORD
• John “JJ” Geeleher, Advocate; Patient; Wisconsin Ambassador, NORD Rare Action Network
• Jake Saltonstall, MPA, Community Engagement Associate, NORD

Enjoy lunch and connect with others who are navigating similar journeys.

Gain the knowledge and tools needed to effectively manage a rare disease journey, from diagnosis to treatment.

Moderator: Tiffany Sammons, Rare Mom, Education Programs Manager, NORD

Speakers:

• James Griffin, Patient; Legislative Advocate; Community Board Member, Medical College of Wisconsin
• Gretchen Heckel, MSN, RN, Nurse; Program Manager, Genetics Clinic; Children’s Wisconsin
• Courtney Miles, Rare Mom; Patient Advocate; Program Manager, Digital Health & Experience, Children’s Wisconsin

Hear heartfelt messages from NORD Education Programs Manager Tiffany Sammons, caregiver and rare mama, about the strength of our community and the power of shared experiences in the rare disease journey.

Speaker:

Tiffany Sammons, Rare Mom, Education Programs Manager, NORD

Networking Activities

This dedicated time is designed to help you build a vital support network and exchange hard-won knowledge. Connect with fellow rare disease patients, families, and caregivers to share coping strategies, exchange resources, and find the practical and emotional support necessary to navigate your journey.

OR

Enjoy the Milwaukee County Zoo 

The Milwaukee County Zoo is home to over 2,200 animals and 340 species. Join us for a fun-filled afternoon exploring the zoo’s most popular habitats. The zoo is open until 4:30pm for you to enjoy.