For one powerful day in Milwaukee, more than 110 people impacted by rare diseases — patients, caregivers, families, clinicians, and advocates — came together to share something simple yet profound: understanding.

At NORD’s Living Rare, Living Stronger event, Nov. 8 at the Milwaukee County Zoo, strangers became neighbors and conversations turned into lifelines. Together, we celebrated strength, swapped stories, learned from experts, and reminded each other that no one walks this rare journey alone.

“We All Have a Story”

The day began with an emotional keynote from Henry “Hank” Heren, a rare cancer survivor and advocate who has spent six years defying a six-month prognosis. Sharing his journey through misdiagnosis, multiple clinical trials, and faith, Hank offered a message that resonated deeply: “Hope is a choice. It’s within our heart.”

He urged everyone to embrace listening as a lost art. “People aren’t always looking for someone to fix it,” he said. “They’re looking for someone to care.”

Hank’s story underscored the heart of advocacy: unity. From fragmented data to underfunded research, he reminded us that patients’ voices must lead the way.

“The real heart of advocacy is you,” he said. “We’re a lot better when we’re together.”

Stronger – and Smarter – Together

Clinicians from NORD Rare Disease Centers of Excellence at Children’s Wisconsin/Medical College of Wisconsin and the University of Wisconsin Center for Rare Diseases emphasized that progress in advancing rare disease diagnosis, care, and treatment depends upon collaboration between patients, families, and clinicians, as well as within and across institutions.  

“None of us is as smart as all of us,” said Donald Basel, MD, medical director of the genetics center at Children’s Wisconsin/Medical College of Wisconsin.  

Panelists took attendees behind the scenes to show how multidisciplinary teams help patients navigate years of misdiagnoses, stripping away old labels to see each case with fresh eyes. “Diagnosis is the cornerstone of advancing rare disease care,” said Brett Bordini, MD.

Stephen Meyn, MD, PhD, co-director of the University of Wisconsin Center for Rare Diseases, noted that diagnostic success has grown dramatically thanks to collaboration and emerging technologies. Yet gaps remain, especially for adults.

April Hall, PhD, MS, CGC, assistant professor and genetic counselor at the University of Wisconsin, explained that while families of children often have access to coordinated care and wraparound services through pediatric hospitals, those supports tend to fall away once patients transition to adult care. Adults may face challenges with insurance coverage, fragmented specialty care, and limited long-term management options. “Infrastructure is stronger for children than for adults,” she said. “We need to bridge that gap.” 

Finding Your Rare Village

Community took center stage in a moving panel featuring patients Niki Grossheim and John Darrin Washburn and rare moms and caregivers Lani Knutson and Stacey Walthers Naffah, who shared advice on how to find – or create – a “rare village” of support.  

For John, who lives with vision loss, connection came through others who shared his specific diagnosis: “I was seeking a community where I could share both hopes and fears.” 

Stacey spoke of learning to accept help after years of being the helper. “Showing up for people is the most important thing,” she said.  

People who want to help may not know how or even what to say; Niki said it’s essential that patients and caregivers learn how to advocate for themselves. “Don’t be afraid to say your needs.” 

Panelists also highlighted the crucial role of clinicians who take the time to hear what families are saying. When Lani suggested a sleep study based on what she’d learned from other rare disease families, her doctor listened. It led to a better care plan for her son. “Listening and collaboration — that’s what saves lives,” she said. 

Grassroots Advocacy

Individual voices drive change. The grassroots advocacy panel highlighted steps anyone can take, from joining NORD’s Rare Action Network (RAN) to participating in awareness campaigns and contacting lawmakers. 

John “JJ” Geeleher, a high school senior and Wisconsin’s RAN ambassador, shared how advocacy empowered him to share his journey with Lacrimo-auriculo-dento-digital (LADD) syndrome. He reminded attendees that “you’re never too young to make a difference.” Social media, schools, and community events amplify the rare disease voice nationwide.  

Navigating Care

In the final discussion of the day, James Griffin, an advocate who lives with sickle cell disease, encouraged others to share their stories with lawmakers and patient advocacy organizations, reminding everyone that change begins with patient voices: “You’re the expert in your own journey.” 

Courtney Miles, a rare mom, described how her son Leo’s care plan connects school, specialists, and daily life. “The people at school — that’s my village,” she said. 

Gretchen Heckel, a nurse at Children’s Wisconsin’s genetics clinic, acknowledged ongoing gaps in mental health support and the transition from pediatric to adult care. However, patient and caregiver voices are shaping real change: “It can feel like an uphill battle, but we are listening.” 

Tiffany and Rowan’s Journey

NORD’s Tiffany Sammons shared her family’s long road to diagnosing her son Rowan with Coffin-Siris Syndrome, an ultra-rare genetic disorder. “Sometimes not knowing what you’re dealing with is far more terrifying than having an answer,” she said, describing both the relief of a diagnosis and the weight of realizing there was no cure. 

Despite predictions he might never walk or speak, Rowan has surpassed every expectation — running, counting in two languages, and showing daily resilience. Discovering NORD gave Tiffany a path from fear to purpose, helping her become the advocate her son, and the broader rare disease community, needs: “NORD helped me find my voice.”  

Living Rare, Living Stronger – Together

From clinicians’ deep dives into diagnosis to families’ heartfelt conversations, Living Rare, Living Stronger reminds us what’s possible when hope, science, and humanity meet.  

As Hank Heren put it, “Pain and difficulty will happen to all of us. But maybe, like me, you’ve found purpose through it.” 

For one day in Milwaukee, and every day, the rare disease community proved that when we listen, connect, and stand together, we are all living rare and living stronger. 

Raise Your Voice

Every voice matters. Join NORD’s Rare Action Network to connect, advocate, and help shape a future where no one facing a rare disease feels alone. 

Join the Rare Action Network