![\"Hank](\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/11\/DSC_3176-1024x684.jpg\")
<\/p>\nFor one powerful day in Milwaukee, more than 110 people impacted by rare diseases \u2014 patients, caregivers, families, clinicians, and advocates \u2014 came together to share something simple yet profound: understanding.<\/p>\n
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.<\/p>\n
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The day began with an emotional keynote from Henry \u201cHank\u201d 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: \u201cHope is a choice. It\u2019s within our heart.\u201d<\/p>\n
He urged everyone to embrace listening as a lost art. \u201cPeople aren\u2019t always looking for someone to fix it,\u201d he said. \u201cThey\u2019re looking for someone to care.\u201d<\/p>\n
Hank\u2019s story underscored the heart of advocacy: unity. From fragmented data to underfunded research, he reminded us that patients\u2019 voices must lead the way.<\/p>\n
\u201cThe real heart of advocacy is you,\u201d he said. \u201cWe\u2019re a lot better when we\u2019re together.\u201d<\/p>\n
Clinicians from NORD Rare Disease Centers of Excellence at <\/span>Children\u2019s Wisconsin\/Medical College of Wisconsin<\/span><\/a> and the <\/span>University of Wisconsin Center for Rare Diseases<\/span><\/a> 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.\u00a0<\/span>\u00a0<\/span><\/p>\n \u201cNone of us is as smart as all of us,\u201d said Donald Basel, MD, medical director of the genetics center at Children\u2019s Wisconsin\/Medical College of Wisconsin.\u00a0<\/span>\u00a0<\/span><\/p>\n 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. \u201cDiagnosis is the cornerstone of advancing rare disease care,\u201d said Brett Bordini, MD.<\/span><\/p>\n 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.<\/p>\n 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. \u201cInfrastructure is stronger for children than for adults,\u201d she said. \u201cWe need to bridge that gap.\u201d<\/span>\u00a0<\/span><\/p>\n 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 \u2013 or create \u2013 a \u201crare village\u201d of support.\u00a0<\/span>\u00a0<\/span><\/p>\n For John, who lives with vision loss, connection came through others who shared his specific diagnosis: \u201cI was seeking a community where I could share both hopes and fears.\u201d<\/span>\u00a0<\/span><\/p>\n Stacey spoke of learning to accept help after years of being the helper. \u201cShowing up for people is the most important thing,\u201d she said.\u00a0<\/span>\u00a0<\/span><\/p>\n People who want to help may not know how or even what to say; Niki said it\u2019s essential that patients and caregivers learn how to advocate for themselves. \u201cDon\u2019t be afraid to say your needs.\u201d<\/span>\u00a0<\/span><\/p>\n 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\u2019d learned from other rare disease families, her doctor listened. It led to a better care plan for her son. \u201cListening and collaboration \u2014 that\u2019s what saves lives,\u201d she said.<\/span>\u00a0<\/span><\/p>\n Individual voices drive change. The grassroots advocacy panel highlighted steps anyone can take, from joining NORD\u2019s Rare Action Network (RAN)<\/a> to participating in awareness campaigns and contacting lawmakers.<\/span>\u00a0<\/span><\/p>\n John \u201cJJ\u201d Geeleher, a high school senior and Wisconsin\u2019s RAN ambassador, shared how advocacy empowered him to share his journey with <\/span>Lacrimo-auriculo-dento-digital (LADD) syndrome<\/span><\/a>. He reminded attendees that \u201cyou\u2019re never too young to make a difference.\u201d Social media, schools, and community events amplify the rare disease voice nationwide.\u00a0<\/span>\u00a0<\/span><\/p>\n In the final discussion of the day, James Griffin, an advocate who lives with sickle cell disease<\/a>, <\/span>encouraged others to share their stories with lawmakers and patient advocacy organizations, reminding everyone that change begins with patient voices: \u201cYou\u2019re the expert in your own journey.\u201d<\/span>\u00a0<\/span><\/p>\n Courtney Miles, a rare mom, described how her son Leo\u2019s care plan connects school, specialists, and daily life. \u201cThe people at school \u2014 that\u2019s my village,\u201d she said.<\/span>\u00a0<\/span><\/p>\n Gretchen Heckel, a nurse at Children\u2019s Wisconsin\u2019s genetics clinic,<\/span> acknowledged ongoing gaps in mental health support and the transition from pediatric to adult care. However, patient and caregiver voices are shaping real change: \u201cIt can feel like an uphill battle, but we are listening.\u201d<\/span>\u00a0<\/span><\/p>\n NORD\u2019s <\/span>Tiffany <\/span>Sammons shared her family\u2019s long road to diagnosing her son Rowan with <\/span>Coffin-Siris Syndrome<\/span><\/a>, an ultra-rare genetic disorder. \u201cSometimes not knowing what you\u2019re dealing with is far more terrifying than having an answer,\u201d she said, describing both the relief of a diagnosis and the weight of realizing there was no cure.<\/span>\u00a0<\/span><\/p>\n Despite predictions he might never walk or speak, Rowan has surpassed every expectation \u2014 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: \u201cNORD helped me find my voice.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n From clinicians\u2019 deep dives into diagnosis to families\u2019 heartfelt conversations, Living Rare, Living Stronger reminds us what\u2019s possible when hope, science, and humanity meet.\u00a0<\/span>\u00a0<\/span><\/p>\n As Hank Heren put it, \u201cPain and difficulty will happen to all of us. But maybe, like me, you\u2019ve found purpose through it.\u201d<\/span>\u00a0<\/span><\/p>\n 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.<\/span>\u00a0<\/span><\/p>\n Every voice matters<\/span>. Join NORD\u2019s <\/span><\/span>Rare Action Network<\/span><\/span><\/a> to connect, advocate, and help shape a future where no one facing a rare disease feels alone.<\/span><\/span>\u00a0<\/span><\/p>\n![\"John](\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/11\/DSC_3423-1024x684.jpg\")
<\/p>\nFinding Your Rare Village<\/h1>\n
![\"John](\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/11\/DSC_3711-1024x1024.jpg\")
<\/p>\nGrassroots Advocacy<\/h1>\n
![\"Gretchen](\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/11\/DSC_2998-1024x684.jpg\")
<\/p>\nNavigating Care<\/h1>\n
Tiffany and Rowan’s Journey<\/h1>\n
![\"A](\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/11\/DSC_9083-1024x684.jpg\")
<\/p>\nLiving Rare, Living Stronger \u2013 Together<\/h1>\n
Raise Your Voice<\/h1>\n