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One Rare

One Rare

个人和家庭福利保障

Newton，MA 682 位关注者

Improving lives & futures of young adults living with rare conditions through education, recreation, and peer support.

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With innovation and better care, those with rare disease are living longer, and healthier lives than ever before. While there are many supportive programs and camps intended for children and their families, it is often those teens and young adults aging out of the programs who need them the most. One Rare was founded by a mother of two young adults with Duchenne Muscular Dystrophy after significant frustration with the lack of recreational, social and educational activities available to foster independence in her sons and others like them. The goal of One Rare will be an organization staffed by young adults with rare disease and their supporters, serving young adults with rare disease. This provides the dual benefit of providing employment experience and opportunities to a population that is often overlooked, and support to the same community.

网站
https://www.onerare.org
所属行业
个人和家庭福利保障
规模
2-10 人
总部
Newton，MA
类型
非营利机构

地点

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  • 查看One Rare的组织主页
    One Rare

    682 位关注者

    Austin Leclaire was a son, a brother, an uncle, and a dear friend to so many but if you asked him - he would say the most important thing about him was that he was a comedian. From his work as an advocate to his passion as a sit-down comedian, he always made sure that before he left there was a smile on every face. Austin will be missed, more than he may ever know, but he would be proud to know that he left every life he touched just a little bit funnier. We love you Austin ?? Always, Your One Rare Family [Edit: Upon further clarification and examination, the proper time of his departure was 11:41pm making the official date February 1, 2025]

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  • 查看One Rare的组织主页
    One Rare

    682 位关注者

    Thank you to the incredible individuals and organizations for your generous donations supporting One Rare’s mission! The One Rare team and Board of Advisors extend a heartfelt ‘Thank You!’ ?? Stay updated on our programs and events and consider making a donation today:?onerare.org/donate.

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  • 查看One Rare的组织主页
    One Rare

    682 位关注者

    Today is Giving Tuesday!?Consider supporting One Rare in your Giving Tuesday donations. Your gift helps us continue providing essential resources and programs for young adults, ages 18-35, living with rare diseases. Make your tax-deductible donation and learn more at?onerare.org/donate. We are so grateful for your support and generosity!

    • One Rare logo, Giving Tuesday hashtag, Headline states today is the day.
  • 查看One Rare的组织主页
    One Rare

    682 位关注者

    Today is Giving Tuesday!?Consider supporting One Rare in your Giving Tuesday donations. Your gift helps us continue providing essential resources and programs for young adults, ages 18-35, living with rare diseases. Make your tax-deductible donation and learn more at?onerare.org/donate. Thank you for your generosity!

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  • 查看One Rare的组织主页
    One Rare

    682 位关注者

    Thank you ChitChatDigital LLC!!! We're so grateful for your support and partnership!

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    ChitChatDigital LLC

    487 位关注者

    We're excited to support One Rare this #GivingTuesday, an incredible nonprofit providing resources & opportunities for young adults ages 18-35 living with #RareDisease, founded by Jennifer McNary of Canary Advisors? & her son, Austin leclaire. This summer, CMO Melissa Daley volunteered with One Rare Experience, an in-person empowerment event supported by Lori Ann Correia, MS, CGC, Mike Struharik, Jim Sliney Jr, RMA, BCPA, Richie Kahn of Canary Advisors?, Nina Baltierra & many others. Link to One Rare in comments.

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  • 查看One Rare的组织主页
    One Rare

    682 位关注者

    Founded in 2019, One Rare provides essential resources and opportunities for young adults (ages 18-35) living with rare diseases, helping them navigate adulthood, build professional skills, and understand today’s healthcare systems. Your generosity this Giving Tuesday fuels our commitment to empowering young adults with rare diseases. Visit One Rare for details, upcoming community events and to donate:?https://onerare.org/donate.

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  • One Rare转发了

    查看Richie Kahn的档案
    Richie Kahn

    Clinical Researcher. Patient Advisor. Glaucomaniac. Rare Disease Advocate.

    There are a lot of worthwhile causes you could support this season. Having had the pleasure of experiencing the life changing empowerment, relationship building, and world class karaoke of One Rare firsthand, I hope you’ll consider supporting our mission to improve the lives of young adults living with rare disease.

    查看One Rare的组织主页
    One Rare

    682 位关注者

    One Rare, a nonprofit founded in 2019, is dedicated to improving the lives of young adults, ages 18-35, living with rare diseases. Through education, mentoring, recreation, and peer support, we offer resources and opportunities that make a difference. Every act of generosity counts. Thank you for supporting this mission. Please visit?One Rare to donate: https://onerare.org/donate

    • Tuesday December 3rd calendar image, One Rare logo, hands exchanging a gift, Giving Tuesday Hashtag,

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