Rare Wish Foundation
Improving the quality of life for rare families by granting wishes, funding clinical innovation, and offering free healthcare tools.
"The North Star is a powerful symbol of guidance and direction that reminds us to stay true to ourselves and follow our own path, even in the darkest of times."
#MakeRareVisible
Our Mission
Making Rare Visible
Rare Wish is a 501(c)(3) nonprofit organization founded by Beth Nguyen, RN, with a singular mission: to improve the quality of life for families affected by rare diseases. Through wish granting, clinical innovation funding, and free healthcare tools, Rare Wish ensures that rare families are not forgotten — but celebrated, supported, and seen.
Any disease impacting fewer than 200,000 people in the United States is considered rare. Yet with more than 10,000 identified rare diseases affecting over 300 million people worldwide, the "rare" community is anything but small. More than 90% of rare diseases have no FDA-approved treatment, and many result in premature death during infancy or early childhood.
Trena's advocacy is deeply personal. Living with a rare disease herself, she experienced years of misdiagnosis and the emotional toll of navigating an invisible illness. That journey ignited a fire — to ensure no one walks this path alone.
Known as "The Zebra Queen," Trena uses her platform as Ms. Elite United USA to amplify the voices of those living with rare and invisible diseases — because every rare life deserves to be visible.
What We Do
Programs & Initiatives
From granting wishes to funding clinical innovation, every program is designed to bring hope, resources, and visibility to the rare disease community.
Wish Granting
Granting wishes to children and adults diagnosed with rare diseases — bringing moments of joy, hope, and dignity to families navigating extraordinary challenges.
Sunny the Rare Bear
Adopt a Sunny bear and send love, sunshine, and hope to someone living with a rare disease. Inspired by a gift of comfort during Trena's own time of loss, Sunny carries a message: you are not alone.
Code Rare
Free healthcare tools designed to support both clinical staff and patients navigating rare disease diagnoses — bridging the gap between medical complexity and human understanding.
Clinical Innovation Funding
Funding evidence-based resources and research to advance understanding, treatment, and quality of life for individuals and families affected by rare diseases.
The Numbers
Why Rare Matters
Rare diseases affect more people than you might think. These numbers tell a story that demands attention, compassion, and action.
1 in 10
individuals will be diagnosed with a rare disease in their lifetime
10,000+
identified rare diseases worldwide
300M+
people worldwide impacted by rare diseases
90%+
of rare diseases have no FDA-approved treatment
25–30M
Americans currently living with a rare disease
500+
rare cancers — all pediatric cancers are classified as rare
Source: National Institutes of Health (NIH) — Rare Diseases Research
A Personal Mission
From Diagnosis to Destiny
For Trena, the mission of Rare Wish is not abstract — it is deeply personal. Living with a rare disease herself, she spent years navigating misdiagnoses and the emotional weight of an invisible illness. That experience became the catalyst for everything Rare Wish represents.
The story of Sunny the Rare Bear began when a friend sent Trena a bear after her father passed away. That simple gesture of comfort planted a seed — what if every person living with a rare disease could receive that same message of love and hope? Today, Sunny bears are distributed to rare disease patients across the country, each one carrying the promise: you are seen, you are valued, you matter.
As Founding CEO of Rare Wish and a leader in Rare STRIDES — a for-profit organization developing technology for healthcare teams dealing with rare diseases — Trena bridges the gap between advocacy and innovation. Her hashtag #MakeRareVisible has become a rallying cry for the rare disease community.
"Help us advocate for the rare disease community and support our mission to make Rare visible."
— Trena J. Myers
Get Involved
Ways to Make a Difference
Whether through a donation, a Sunny bear adoption, or simply sharing the mission — every act of support helps make rare visible.
Make a Donation
Every dollar brings us closer to granting a wish, funding research, or providing free healthcare tools to families in need.
Donate NowAdopt a Sunny Bear
Send a Sunny the Rare Bear to someone living with a rare disease. Each bear carries a message of hope, love, and visibility.
Adopt a BearBecome a Sponsor
Sponsorships provide funds to grant wishes and foster innovative programs that serve the rare disease community.
Learn MoreSpread the Word
Follow Rare Wish on social media and use #MakeRareVisible to help amplify the voices of those living with rare and invisible diseases.
Follow UsEvery Rare Life Deserves to Be Visible
Cre8tive Agency proudly donates 4% of profits to Rare Wish Foundation. Your support — whether through a direct donation, a Sunny bear adoption, or sponsorship — helps grant wishes, fund research, and provide free healthcare tools to families navigating rare diseases.
Rare Wish Foundation is a registered 501(c)(3) nonprofit. All donations are tax-deductible.