When the Diagnosis is Rare
Rare diseases are considered “rare” because they impact fewer than 60 in 100,000 people; these conditions are often chronic, progressive, degenerative and life-threatening and affect more than 300 million people worldwide.
According to the National Organization for Rare Disorders (NORD), 1 in 10 Americans live with a rare disease, and about half of them are children.
For many families, that means long journeys to find a diagnosis, specialists scattered across states or countries, limited research and few treatment options, and feeling isolated —even within their own community.
Children living with rare diseases often grow up feeling overwhelmed by medical appointments, uncertainty, and questions without easy answers. They live with physical disabilities, fatigue, mobility challenges, and/or visible scars, all of which can lead to feeling different. They face uncertainty and emotional isolation due to rarity; very few people truly understand their condition.
Where Everything Changes
SeriousFun camps are more than sleep-away camps with a nurse on call. They are medically supported, fully equipped environments built specifically for children living with complex and rare conditions to experience laughter, friendship, and adventure. Our camps and programs combine medical leadership, adaptive design, and decades of experience across 100 plus conditions, worldwide, to enable children to participate fully and safely.
Doctors, nurses, and trained volunteers at SeriousFun camps don’t simply supervise: they make the impossible possible.
For children and families navigating diagnoses that few people have ever heard of, access to experiences offering this level of safety and specialization is extraordinary. It means that a child with a rare condition can climb, swim, and sing at the campfire.
It means a child whose condition sets them apart can finally feel like they belong.
For SeriousFun campers Adam and Ellena, camp empowered them to discover friendship, confidence and a new sense of possibility. In honor of Rare Disease Day, February 28, 2026, we share their stories below.
Real Outcomes: Stories from Camp
ADAM spent his childhood in and out of hospitals, carrying scars and questions that made him feel different from everyone else…
ELLENA was born with CLOVES Syndrome, a condition so rare that only around 300 people in the world share it. She grew up with a prosthetic foot she calls her “super foot.” And for most of her childhood, she felt like the only one…