A Dream Getaway For Families in the Rare Disease Community
Welcome to Rare At Sea
As a family in the rare disease community, you know how rare and precious it is to find a place where your family can truly relax, connect, and have fun—without the usual worries. That’s why Rare At Sea was created, inspired by the amazing connections built through podcasts like Two Disabled Dudes and Once Upon A Gene.
Effie Parks (host of Once Upon A Gene) and Sean Baumstark (co-host of Two Disabled Dudes) understand firsthand how important it is to have spaces for our community to come together. From years of attending rare disease conferences, we’ve found that the real magic happens outside the sessions—when we can unwind, laugh, and build friendships with people who just “get it.”
Rare At Sea will bring that same magic to a whole new setting: a cruise to the Bahamas in recognition of Rare Disease Day 2026! With modern cruise ships offering accessible accommodations for diverse needs, this trip is designed to help families like yours enjoy a true getaway, complete with sunshine, great company, and maybe a margarita or two.
Rare Reflections
We knew we were in from the moment the idea came to life!! Being on the inaugural Rare At Sea was an amazing experience through and through. Being surrounded by fellow families and individuals that GET this complex medical life is such chicken soup for the soul.
While Savannah was the only individual with Ogden Syndrome, we never once felt alone. We were surrounded by individuals and families representing different diagnoses, yet united by the same resilience, advocacy, and unwavering love for those in the rare community. That shared experience created immediate and meaningful connection.
For kids living with rare diseases, the world can sometimes feel incredibly small. They gain confidence seeing peers who are thriving, dreaming big, and navigating challenges just like they are. And maybe most importantly, they get to just be kids together laughing, playing, and creating memories beyond diagnoses. This isn’t just a cruise. This is community. This is understanding. This is joy without explanation.
Why Rare At Sea?
Accessible Adventures
Cruise ships are thoughtfully designed with accessibility in mind in public areas and private cabins. Enjoy a comfortable and fun space that considers various needs and abilities.
Community & Connection
Build meaningful relationships in a supportive environment. Connect with others who understand your journey, share experiences, and create lasting friendships on board.
Relaxation & Fun
Unwind with a variety of activities suited to your interests. Whether it’s lounging on deck, savoring delicious meals, or enjoying live entertainment, there’s something for everyone to enjoy.
Unforgettable & Uplifting
From breathtaking ocean views to memorable shore excursions and the meaningful connections you’ll make with other families, this adventure will fill your heart and lift your spirits.
Special thanks to our Media Sponsor for amplifying the Rare At Sea
mission across the rare disease community.
Bionews is the leading rare disease news and community network, built on over a decade of serving and supporting patients and caregivers.