Our Initiatives
Meaningful projects, campaigns, and events that help raise awareness, support families, and creates a ripple effect that reaches far beyond one moment, one family, or one diagnosis.
Communication Board Project
Creating Inclusive Play for Every Child
We’ve partnered with Girl Scout Troop 60929 and Coastal Speech Therapy to install a communication board at a local park—making it easier for non-speaking and speech-delayed children to express themselves and connect with others.
These boards use visual symbols to support children who use AAC (Augmentative and Alternative Communication), as well as their families, peers, and caregivers.
This project reflects our mission: creating inclusive, accessible spaces for families affected by rare genetic conditions—and beyond.
Want to bring a board to your park?
We’re looking to expand. Contact us or donate to support
Family Spotlight Series
Sharing Rare Stories. Building Rare Community.
Every family navigating a rare genetic disorder has a powerful story—and we want to help share it. Our Family Spotlight Series highlights the lived experiences of families raising children with rare conditions, helping others feel seen, supported, and less alone.
Whether it's a recent diagnosis, a journey through treatment, or a moment of unexpected joy—we believe these stories can educate, inspire, and connect.
Know a family we should feature?
Submit a story or contact us to learn more.
Founder’s Work: I Am Rare (Book Project)
Created by our founder, “I Am Rare” is a personal project inspired by her journey raising a child with a rare genetic disorder. The book empowers children and families to embrace what makes them unique. A portion of proceeds will benefit Rare Genes Movement and other organizations supporting the rare disease community.
Stay tuned for updates on how you can support this project and help bring “I Am Rare” to life!
Stripes For Parker
In honor of Parker Boyer and Rare Disease Day
February 29th
@ Stage House at 6:00 - 10:00 pm.
1719 Amwell Road Somerset, NJ 08873
Five-year-old Bridgewater resident Parker Boyer has a rare disease and will take part in a global movement to raise important awareness for Rare Disease Day on February 29.
We are walking a road less traveled to assure the short term support and long term independence for our son. Advice from the many parents, medical professionals, and educators doesn’t exist when you are talking about an extremely rare disorder. We will pave the road for Parker and those that may come after him by spreading awareness to get the necessary support for any child diagnosed with WSS to not just survive but thrive. What would you do if it were your son?
According to the National Institutes of Health (NIH), a disease is rare if it affects less than 200,000 people in the United States. Over 25 million Americans live with a rare disease—and nearly half of these patients are children. For the more than 7,000 known rare diseases, 90% are still without FDA-approved treatments.
We will be hosting the event:
STRIPES FOR PARKER BENEFIT
The event is open to the public.
•Donations will be greatly appreciated at the door.
•Appetizers will be provided.
•Raffle for a good cause.
Rare Disease Day is marked globally every year on the last day of February—and this year is the rarest date on the calendar because of leap year — to underscore the nature of rare diseases and what patients face. The National Organization for Rare Disorders (NORD) is the sponsor of Rare Disease Day in the United States. NORD’s “
“Show Your Stripes” campaign’s core message is to wear stripes on Rare Disease Day to raise awareness and show support for those living with rare diseases. #showyourstripes #stripesforparker