February 29th, the rarest day of the year, is International Rare Disease Day! It’s a day devoted to raising awareness of all rare diseases, promoting knowledge, and the importance of research on these diseases.
Since 2001, Next Step has offered numerous programs for teens and young adults living with chronic illness. Teens and young adults with a rare diagnosis face a number of obstacles, from stigma, isolation, or missed educational and social milestones. Your charitable and thoughtful support over the years has allowed us to expand our FREE programs to even MORE young people living with rare diseases. We’ve helped these young people realize their own potential to overcome stigma and isolation while discovering a community where they truly belong and can depend on as they transition into adulthood.
49% of the young people that attended our community, music and mentorship programs in 2023 live with a rare disease. Because of your generous support, our young participants are moving from an illness mindset to a future growth mindset. Take a look at the tremendous impact you’ve had on the young people living with rare disease based on our pre- and post- program surveys:
- 200% change: “On most days, I choose to do at least one thing for myself”
- 100% change: “I feel confident that I can work with my medical providers to build my medical plan”
- 133% change: “I feel confident that I can express my needs to people in my life”
- 67% change: “I feel motivated to change the things I want to change in my life”
Our programs are helping these young people realize that they aren’t their diagnosis and they can have the same hopes and dreams of being a doctor, a photographer, a lawyer, or an artist just as their healthier peers do. The only difference is that they have a rare disease. We wouldn’t be able to do the work that we do without you, thank you.
Join us today, February 29th, to bring awareness to all rare diseases and celebrate teens and young adults who don’t let their diagnosis stand in their way of developing the skills, knowledge, and self-confidence to truly say, “I Believe in Me.”
