Rare at Sea

February 13–18, 2027 · Bahamas

A Dream Getaway For Families in the Rare Disease Community

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: big ship cruises on the open seas! With modern cruise ships offering accessible accommodations for diverse needs, these trips are designed to help families like yours enjoy a true getaway, complete with sunshine, great company, and maybe a margarita or two.

Rare Reflections

“For five days I felt a connectedness with complete strangers that doesn’t exist in my everyday life. Rare at Sea was an opportunity to share stories, triumphs, tips for success, and many laughs.”

“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.”

“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.”

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.

Join our next cruise in February 2027!

Our inaugural cruise in 2026 was a blast and we’re heading back to the Bahamas in 2027. Click the button below for more details.