rare disease
Run the 2024 Falmouth Road Race
We have a special opportunity for you to add a prestigious national running race to your running resume while...
read moreOur second Summer Campference was so much fun!
We had so much fun at our second 2023 Summer Campference last weekend. Games were played, life skills were...
read moreWatch Next Step and Kendall Square Orchestra perform together!
We have exciting news to share with you! A group of Next Step participants living with serious illness had...
read moreJoin a 2023 Next Step Summer Campference!
Part camp, part conference, our free, residential Summer Campferences foster friendships and community with peers who “get it.” Next...
read moreJoin our 2022 Summer Campference for young people living with rare genetic disorders
We are hosting FaceForward, our annual virtual Summer Campference for young people living with rare genetic disorders, from Thursday,...
read moreSupport Next Step tomorrow on #GivingTuesdayNOW
“The uncertainty of COVID-19 has affected everyone, but for chronically ill teens and young adults who are already vulnerable...
read moreNext Step Staff Spotlight with Jess!
We thought, during these uncertain times of COVID-19, that it would be fun to take a break from the...
read moreThank you to our Summer Campference music therapists!
Have you ever been to a “Campference”? We have! We have three of them every summer; A special 4-day...
read moreLearn about our programs for young people living with a rare disease
“Living with a rare disease is isolating and very lonely at times and Next Step with its programs empowers...
read moreRare Disease Day 2020 is this Saturday, February 29th!
“Next Step has helped me redefine my relationship with the labels that accompany me and my rare disease. When...
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Today is @rarediseaseday. The 2026 theme, “More Than You Can Imagine,” highlights equity in care, representation and unseen challenges. 'When Lightning Strikes' was created by youth with sickle cell as they felt this population wasn't represented in media.
...https://www.nextstepnet.org/whenlightningstrikes/
🌍 It’s #RareDiseaseDay 2026! 💜
Today we stand with the 300 million people living with a rare disease. Together, we’re showing our colours, raising awareness, and inspiring change by talking about what equity means to us.
👉 Read more: https://t.co/T0KRlbRCJX