One Rare

08/02/2026

That’s a wrap!
Our 5th One Rare event has come to a close! Safe travels home and see you next time One Rare family.

08/01/2026

As day three is capped off we would like to give a quick summery of the days events but certainly not before we thank everyone who participated today including: our amazing presenters, Kate Stratton, Gabe Mollica, Walker Burger, Richie Kahn, and Melissa Daley, our adorable therapy dogs storm and Vigi (and of course their owners at pet partners) and last but not least the hilarious and talented comedians, Gabe Mollica, Katie Farrell, Robbie McClusky and AJ Coulter.

We started the morning with another relaxing yoga session before diving into a comedy workshop, and learning about advocating for your treatments.

Next, we explored how to make AI work for you, discovering practical ways technology can help us in our everyday lives.

The smiles kept coming as therapy dogs Storm and Vigi joined Max’s service dog Daniel for plenty of cuddles, and the ice cream truck rolled in.

The afternoon was filled with spontaneous karaoke, and dance parties before we wrapped up the evening with a fantastic comedy show featuring both local and traveling comedians.

Thank you again to everyone, both participants and presenters for the amazing day and we cannot wait to see what tomorrow brings!!

07/31/2026

What an incredible second day!
Before we get into the specifics we would like to give a huge shoutout to our Takada Volunteer Amanda for all of her help! We would also like to thank each of our presenters, Kate Stratton, Melody Joy Paine, Lindsey Guentzel and Tara O’Connor.

We started the morning with an amazing yoga session led by Kate from Lipodystrophy United, setting the tone for a day focused on wellness, connection, and community.

Throughout the day, participants learned how to tell their stories with impact, developing skills in storytelling, pitching, creating a strong hook, and building meaningful connections through personal experiences.

In the afternoon, everyone had the opportunity to experience adaptive sports! Participants took a spin in a Volt hockey chair and tried their hand at adaptive Boccia ball. A huge thank you to the Boston Whiplash and the Boston Self Help Center for sharing these incredible sports and creating such a fun, inclusive experience.

We wrapped up the day with a truly special evening at Melody’s Rare Rebels film event at the Museum of Science in Boston, featuring One Rare participant Sybil and her mom, Hope. It was an amazing way to wind down the day!

Thank you to everyone who made Day 2 so memorable. We can’t wait to see what tomorrow brings!

07/29/2026

Amazing first day with our 2026 One Rare crew! Many thanks to our volunteers, and participants for getting this summers event off to a great start!

03/12/2026

After a lot of hard work, we’re excited to announce that One Rare Experience will be held in Boston, MA July 29-August 1, 2026. Interested in possibly attending? Let us know by filling out a brief survey at

Our 2026 One Rare Experience (ORE) will be held from July 29th to August 1st at Boston college, Boston MA. The agenda is currently in the works but check out our past events tab to see the kinds of activity's to expect. We hope to see you there!

12/04/2024

Thank you to the incredible individuals and organizations for your generous donations supporting One Rare’s mission! The One Rare team and Board of Advisors extend a heartfelt ‘Thank You!’ ❤️

Stay updated on our programs and events and consider making a donation today: onerare.org/donate.

12/03/2024

Today is Giving Tuesday! Consider supporting One Rare in your Giving Tuesday donations. Your gift helps us continue providing essential resources and programs for young adults, ages 18-35, living with rare diseases.

Make your tax-deductible donation and learn more at onerare.org/donate.

Thank you for your generosity!

11/21/2024

One Rare, a nonprofit founded in 2019, is dedicated to improving the lives of young adults, ages 18-35, living with rare diseases. Through education, mentoring, recreation, and peer support, we offer resources and opportunities that make a difference. Every act of generosity counts.

Thank you for supporting this mission. Please visit One Rare to donate: https://onerare.org/donate

07/19/2024

Highlights from Day 1 of One Rare Experience in Albany, New York! We kicked off our time together with mindfulness exercises and a great discussion on mental health led by Mary Bartlett. Of course we had to end the night with karaoke!

07/16/2024

Buying on Amazon Prime Day? Toss a few extra things in your cart for the One Rare Experience happening THIS WEEK!

***Please use same or next day shipping*** so items arrive by 17 July when we kick off!!