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PAVING THE WAY TO INCLUSION
Working Toward an Inclusive Future
The Rare Road Foundation is a 501(c)(3) non-profit organization, created inspired by our own challenges that we face as families of children with rare genetic diagnoses. We aim to offer support, community, joy, and opportunities to others in similar situations. Our mission is to transform the rare path into one of fulfillment and connection. We envision a future where such paths are understood and supported, where rarity and disabilities aren't barriers, but reasons to celebrate our shared humanity. Through dedication and advocacy, we aim to integrate these experiences into the fabric of society.
Upcoming Events
4th Annual Remy's Walk + Block PartySun, Jun 22Andover
WHO WE ARE
Our Roots
The Rare Road Foundation was founded by two families who connected through their daughters' rare genetic diagnosis: HNRNPH2 and Phelan-McDermid Syndrome.
While their diagnoses varied, they encountered a range of similar challenges along their paths. These shared experiences brought them together, creating a bond of camaraderie and unity. They found comfort and resilience in knowing they weren't alone in their journey, this mutual understanding cultivated a supportive atmosphere where they could rely on each other, share insights, and navigate the complexities of their situations together.
Based on their own experiences, they understand how overwhelming and isolating it can be receiving a diagnosis for your child. The Rare Road Foundation's mission is to foster connections in the disability community, empowering individuals and families to participate in the opportunities offered by our society, while advocating for more possibilities.
We are committed to making a positive change. Our strength lies not only in our principles, but most importantly in the actions of our initiatives. Join us in supporting and empowering individuals with disabilities, rare diseases, and their families.
OUR WORK
The Focus of Our Efforts
At Rare Road Foundation, our mission is to include, support, empower, and provide resources for individuals with disabilities, rare diseases, and their families. We aim to strengthen our community through family meetups, resource sharing, and fundraising initiatives to support our projects.
Currently, we are working towards enhancing playgrounds in northeast Massachusetts, making them more accessible and inclusive for everyone. Playgrounds are not only a place to play, but they also serve as essential community spaces, promoting physical activity, social interaction, and fostering connections among neighbors. We believe every child and family, regardless of abilities, should have access to these benefits. That's why we're collaborating with the towns of Andover and Topsfield to improve existing playgrounds and create inclusive environments for all. By prioritizing accessibility, we encourage full participation and strengthen community bonds, ensuring that every child has the chance to play, and every family can connect.
We're also dedicated to recognizing and responding to the changing challenges that individuals with disabilities and rare diseases face. In the long term, we pledge to stay vigilant and provide ongoing support as new issues arise.
Our goal is to offer flexible, adaptive solutions that empower individuals and families, providing them with resources and assistance to navigate various challenges. By actively listening to and engaging with our community, we strive to deliver inclusive support that evolves alongside their needs.
Rare Road Foundation is a 501(c)(3) public charity. EIN 99-3366299