top of page

The Full Story

About Rare Wish and Rare STRIDES

Mission of Rare Wish

Rare Wish is a nonprofit (501c3) exempt organization that improves the quality of life for rare families by granting wishes, funding clinical innovation, and offering free healthcare tools.

Our Humble Beginnings

Rare STRIDES logo holds a special meaning: “It’s the dawn of a new day for the rare community”. Rare STRIDES shares its tree of life logo with Rare Wish because Rare Wish is a subsidiary sister company that was born under Rare STRIDES. Rare Wish and Rare STRIDES are aligned in their mutual vision to give back to the rare community through a variety of ways. Because we love the rare community we are passionate about sharing the story of Rare STRIDES and Rare Wish with each person we meet with the hope to inspire them into action to help a rare child or adult and to inspire them to join the effort to give back whether it is through advancing medical education and healthcare innovation or if it’s through granting wishes and advocacy efforts; all of it converges to enhance the quality of life for children and adult with rare diseases and we hope you can join us! We are so passionate about each other we even share a hashtag: #makerarevisible

Rare Wish logo copy transparent.tif

How we Are Aligned

Rare Wish-Rare STRIDES established a Rare Wish Program and Rare Wish Fund back in 2021 to donate and grant wishes for children and adults with rare diseases. Rare Wish 501c3 Nonprofit was established in 2023 to officially grant wishes and fund clinical innovation for children and adults with rare diseases.

 

Code Rare Program was first established within Rare STRIDES to teach first responders and medical teams about rare diseases and connect them with evidence-based trustworthy resources. Rare Wish launched a Code Rare Library to display free resources that 501c3 Nonprofits enrolled in the Code Rare program would like to share with the rare community.

Code Rare offers two programs: Code Rare Community and Code Rare Medical which will be coming soon!

 

Rare Wish Bears-this program received its start under Rare STRIDES and quickly grew into a program in Rare Wish to give hope to children and adults battling rare diseases. The bears will be present during all shared events for adoptions and are a stable visual in the Code Rare program to provide hope and bring joy all year long!

 

 

MakeRareVisible (5)
Moxie 2023 2
Congrats RS BN
Congrats to Trena Rare Wish
Rare Bears RW RS 2023
RS You are Visible
RS Rare Advocacy
RS Team Fun 2023 bn
Trena and Beth standing in front of the Gwinnett Chamber step and repeat,

How we are Different

Rare STRIDES and Rare Wish have two distinct leaders that share two diverse backgrounds.

Trena Myers and Beth Nguyen are both visionaries and passionate rare leaders with diverse backgrounds that love giving back to their rare community. Over time, they forged a beautiful friendship, and are bonded through their rare journeys, faith, and share a mutual respect and trust for each other’s leadership qualities and decision making.

 

Beth is a registered nurse who wears multiple volunteer hats in the rare sector. She is the co-founder of Rare STRIDES, Founder of Rare Wish, Author of "Beyond Syringomyelia", and Chairperson of Georgia’s Rare Disease Advisory Council responsible for leading the legislation to establish the first Georgia Rare Disease Advisory Council to serve families with rare diseases.

Trena is the CEO of Rare Wish and MS Elite Georgia United USA where her platform is advocating for rare families. She is a rare leader, professional public speaker, and organized a 5K team for Immune Deficiency Foundation. In addition she is a professional artist, author and is a respected community ambassador battling a complex rare journey. Uniting in leadership just made sense.

 

We truly understand the hardships rare families face navigating healthcare and community through our own rare journeys. We took the time to connect with thousands of rare families in the rare nonprofit community sharing their unique rare journeys along the way. Over the years we learned from rare leaders, parents, and patients facing similar hardships. In many cases there are limited stable funding options for medical innovation and programs, funding gaps for research and heartbreaking unmet needs across the rare community. As a result, there have been numerous roadblocks and barriers to prevent progress for many rare diseases resulting in preventable complications and even deaths in the rare community. United we want to make changes to give back to our rare community. United, they move ahead to pave a new path of hope for the rare community. 

Our Missions are Different.

Rare STRIDES mission is focused on building innovative customized healthcare tools that empower medical teams and rare families, uniting stakeholders through our Code Rare program. We are passionate about supporting each individual's rare journey every step of the way; while Rare Wish is focused on giving back to rare families in the community through granting rare wishes, funding clinical innovation, and offering access to free healthcare tools.

Rare STRIDES is committed to providing free healthcare tools for patients with rare diseases. To do this we made a promise to donate a portion of our proceeds to support the mission of Rare Wish on an annual basis. To accomplish this, Rare STRIDES established a Rare Wish Fund. When users access clinical tools built by Rare STRIDES they can give back to the rare community. In speaking with hundreds of physicians they all agree that it would be an honor to see the dollars go back to help the community we serve. Rare STRIDES and Rare Wish are sister organizations to accomplish this hefty goal; each having their own unique purpose.

Rare STRIDES began as a vision in 2016 and Rare Wish received its official 501c3 nonprofit status in 2023. Both companies have their own distinct missions and purposes; with a shared promise to give back to the rare community. Through their growth a groundbreaking new model quickly emerged to define our strengths and unite us in our promise and vision to give back to the rare community through our free programs and innovative services.

We are embarking on a brave new path; to ensure that rare families have hope, feel supported, and to ensure their healthcare and community needs are taken care of now and in the future to enhance their quality of life. Rare STRIDES and Rare Wish are united in our promise; this is our shared vision for giving back and we thank you for your support!

bottom of page