Our Initiatives
Meaningful projects, campaigns, and events that help raise awareness, support families, and inspire action.
At Rare Genes Movement, our initiatives help shine a light on rare genetic disorders and bring families the support they deserve. Explore our current and upcoming projects below. Stay tuned — we’re just getting started.
Communication Board Project
We’re collaborating with a local Girl Scout chapter to create and install an inclusive communication board in a community park. This visual tool supports children with speech and language challenges, helping nonverbal or minimally verbal children communicate, connect, and engage more fully in play.
Together, we’re working to make public spaces more accessible and inclusive, while raising awareness about the importance of communication tools and connecting families to speech therapy resources.
👉 This project reflects our shared commitment to building communities where every child’s voice can be heard.
I Am Rare: Upcoming Book
I Am Rare is a children’s book was created to celebrate the strength, uniqueness, and resilience of children with rare genetic disorders. Through heartfelt storytelling and inclusive illustrations, this project aims to raise awareness and offer encouragement to families on this journey.
For transparency, I Am Rare is a personal project led by our founder. While separate from the nonprofit’s direct activities, this book reflects the same purpose that inspires Rare Genes Movement: amplifying voices and supporting families affected by rare conditions.
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