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"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
Tis the Season to Top it Off at Top Golf
Tis the Season to Top it Off at Top Golf
9 DAYS TO THE EVENT
Join Us for a Special Top Golf Event! 'Tis the Season to celebrate with the rare disease community at our exclusive Top Golf, Top it Off event! We are thrilled to invite individuals and families impacted by rare diseases to enjoy a fun-filled day of golfing, laughter, and connection.
When
Dec 15, 2024, 4:00 PM – 7:00 PM EST
Where
Buford,
2935 Buford Dr, Buford, GA 30519, USA
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Who We Are

Rare Wish is a nonprofit with the mission to improve the quality of life for rare families by granting wishes, funding clinical innovation, and offering free healthcare tools. 

 

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This image describes our goals and commitments to the rare disease community.
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Make a donation

Donating to Rare Wish is a meaningful opportunity to make an impactful difference in the lives of individuals with rare diseases. Rare Wish is dedicated to granting heartwarming wishes and delivering joy through Sunny the Rare Bear, offering comfort and hope to those facing challenging health journeys. Your contribution not only supports the operational needs that ensure the seamless delivery of these wishes but also directly impacts the well-being of recipients. By supporting Rare Wish, you become a vital part of a compassionate community dedicated to uplifting spirits and creating cherished memories for individuals and families navigating the complexities of rare diseases. Your generosity helps transform dreams into reality, offering a beacon of light and kindness when it is needed most.

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Founder, Beth Nguyen with a concert guest holding up a #makerarevisible frame
Fun photo from the concert. Ice cream character.

1 in 10 Individuals Will be Diagnosed with a Rare Disease in their Lifetime.

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There are Currently More than 10,000 Identified Rare Diseases Impacting More Than 300 Million People Worldwide.

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Any Disease Impacting Fewer Than 200,000 People in the US is Considered Rare.

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25 to 30 Million Americans are Living with a Rare Disease.

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Many Rare Diseases May Result In the Premature Death of Infants or Can be Fatal in Early Childhood.

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All Pediatric Cancers are Rare.

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There are More Than 500 Rare Cancers.

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More than 90% of Rare Diseases are Without an FDA Approved Treatment.

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Rare Diseases Affect an Estimated 350 Million People Worldwide.

* Statistics from the National Institute of Health

Ways We Help

The Focus of Our Efforts

Rare Wish's 1st Recipient, Beck

Helping Those Who Need Us Most

Rare STRIDES and Rare Wish at the annual Glow in the Dark Concert.
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Resources

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Become a State Leader

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Grant a Wish

Sunny the Rare Bear

Adopt a Rare Bear Today! 

Sunny the Rare Bear started out as a gift to one of our staff members at Rare Wish. There is an old quote by Theodore Woodward, professor at the University of Maryland School of Medicine: "When you hear hoofbeats think of horses, not zebras." This quote coined the term zebra which is used today to describe a rare disease.

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Every rare bear will display zebra stripes in honor of the rare community. For each bear that is "adopted" we will distribute to a child or adult with a rare disease to provide hope. Adopters will receive a certificate of adoption. 

 

Each bear displays a QR tag. When the code is scanned a donation can be made to grant another wish for a child or adult with a rare disease so it keeps giving back all year long!

 

Sunny the Rare Bear is looking for volunteer bear makers and sponsors. If you are a medical team member or facility interested in having a rare bear given to your patient, please contact us for details.

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If you would like to contribute to our Amazon Wish List.

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If you would like to nominate someone to receive a rare bear, apply below.

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Sponsors:

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Sponsorship Opportunities

Rare Wish is a nonprofit organization that is dedicated to granting wishes to children and adults who have been diagnosed with a rare disease and funding clinical innovation to support patients and families impacted by rare diseases. As a non-profit organization, Rare Wish relies heavily on the generosity of sponsors and donors to grant wishes and foster innovative programs and services for these deserving individuals.

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Sponsorships are so important to Rare Wish because they provide the necessary funds to grant wishes and make a difference in providing trustworthy resources, medical education, and ongoing clinical innovation. Without sponsorships, Rare Wish would not be able to continue its mission of bringing joy, hope, and happiness to children and adults; many are facing some of the toughest challenges of their lives.

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Sponsors also play a key role in building awareness and support for Rare Wish. By sponsoring an event or program, sponsors help raise awareness about the important work that Rare Wish does, and they help encourage others to get involved and support the organization too.

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Overall, Rare Wish depends on and appreciates sponsorships because they are essential to the organization's ability to fulfill its mission and make a positive impact on the lives of children and adults who deserve quality of life and excellence in all areas of healthcare.

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