National Organization for Rare Disorders (NORD®) Brings Together 100+ Wis. Families for a Day of Hope, Learning, and Community During National Family Caregivers Month
WHAT: As National Family Caregivers Month shines a light on those who care for loved ones, the National Organization for Rare Disorders (NORD®) will bring together more than 100 Wisconsin families impacted by rare disease at the Milwaukee County Zoo this Saturday for Living Rare, Living Stronger.® With over 500,000 Wisconsinites living with rare disease, the event offers emotional visuals and heartfelt stories as rare disease patients, caregivers, and advocates (the “zebras” of medicine) unite to navigate life with a rare disease.
BEST PHOTO/VIDEO OPPORTUNITIES:
- 8–9 a.m.: Breakfast, family arrivals, interviews with caregivers and patients
- 9:10–9:30 a.m.: Veteran Henry “Hank” Heren shares his rare disease journey
- 10:15–11 a.m.: Caregivers and families tell their stories in “Finding Your Rare Village”
- 2 p.m.–on: Networking and zoo activities with rare families
WHEN: Saturday, Nov. 8, 2025
- Breakfast: 8 a.m.
- Program: 9 a.m.–2 p.m.
- Zoo activities to follow
WHERE: Milwaukee County Zoo – Zoofari Conference Center, 9715 West Bluemound Road, Milwaukee, Wis., 5322
WHY IT MATTERS:
More than 30 million Americans — including more than 500,000 Wisconsinites — live with a rare disease. Many rely on family caregivers who confront medical, emotional, and financial challenges. During National Family Caregivers Month this November, NORD’s event offers tools, expert guidance, and community connections to support those who care for rare loved ones.
WHO:
- Pamela K. Gavin, CEO, NORD
- Local advocates, patients, and caregivers, including:
- John “JJ” Geeleher, a high school senior and rare disease advocate living with the rare genetic disorder LADD Syndrome
- James Griffin, a rare disease advocate and author living with sickle cell
- Lani Knutson, Legislative Advocacy Team lead for Cure CMD; rare mom and caregiver
- Courtney Miles, rare mom and caregiver
- Experts from NORD Rare Disease Centers of Excellence at Children’s Wisconsin, the Medical College of Wisconsin, and the University of Wisconsin
Learn more about the Living Rare, Living Stronger event at livingrare.org.
MEDIA RSVP:
To attend and/or schedule interviews with speakers or attendees, please contact: Jackie Avial, Director of Content, NORD, [email protected], 475-203-7025
ABOUT NORD:
Founded in 1983, the National Organization for Rare Disorders (NORD®) is a leading independent, nonpartisan, nonprofit patient advocacy organization dedicated to improving the health and lives of over 30 million Americans living with rare diseases. In partnership with more than 350 disease-specific member patient organizations, NORD drives progress in rare disease research, care, and policy. Learn more.
