Your gift fuels research and education that powers big dreams while together we build community. Give now: https://ow.ly/20vt50UaOqG #Marfan #LoeysDietz #VEDS
The Marfan Foundation
非盈利组织
Port Washington，New York 2,399 位关注者
Our mission is to save lives and improve quality of life while building community.
关于我们
We're a welcoming community for people living with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, Stickler, Vascular Ehlers-Danlos syndromes and related conditions. We fund research, education, and programming that aims to save lives and improve quality of life. We're the leading online resource for scientists, healthcare providers, and laypeople alike.
- 网站
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https://marfan.org/
The Marfan Foundation的外部链接
- 所属行业
- 非盈利组织
- 规模
- 11-50 人
- 总部
- Port Washington，New York
- 类型
- 非营利机构
- 创立
- 1981
地点
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主要
获取路线
22 Manhasset Ave
US，New York，Port Washington，11050
The Marfan Foundation员工
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Lynn Crisci
Resilience Speaker / Boston Marathon Bombing Survivor / Author / Actress / Patient Advocate / Consultant / Clinical Trials / Rare Disease / Migraine…
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Deborah Goodman
Senior Vice President Development at The Marfan Foundation
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Josephine Grima
Chief Science Officer at The Marfan Foundation
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Helaine Baruch
Chief Philanthropy Officer at The Marfan Foundation
动态
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"Passion and teamwork and commitment and hope" from an "army" of scientists around the world" focused on the "groundbreaking science that will lead to solutions"...Dr. Kim Eagle, volunteer lead of the Foundation's science arm, will update us regularly on progress and hope! #Marfan #LoeysDietz #VEDS #research #science #hope
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Join us on December 11 to learn more. Register here: https://ow.ly/sfsM50UauPh #Marfan #LoeysDietz #VEDS #mindfulness #joy
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Rachel Martin made the trip of a lifetime -- to the Foundation's Conference and the way to a medical answer: Loeys-Dietz syndrome. https://ow.ly/k5Ft50U8zhR #loeysdietzsyndrome #loeysdietz
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Did you know we have information to help you find expert care for yourself or a loved one living with Marfan, Loeys-Dietz, VEDS or a related condition? https://ow.ly/qw7e50U8vNw #Marfan #LoeysDietz #VEDS
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Help Haley and all kids living with genetic aortic and vascular conditions get the opportunity to experience their big dreams. Support our research and education campaign today. Fund the future! marfan.org/impact #Marfan #LoeysDietz #VEDS
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Happening now: community connections and expert talks at the New Jersey Symposium. Huge thanks to Atlantic Health System Morristown Medical Center Dr. van Boxtel and colleagues #LoeysDietz #Marfan #VEDS
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Evento virtual: Cumbre de La Fundación Marfan 2025, 25 de enero de 2025, 10 a.m. - 12:30 p.m. hora del este. Invitamos a los pacientes y sus familias a que se unan a nosotros para una ma?ana de educación sobre el síndrome de Marfan, el síndrome de Loeys-Dietz y el síndrome de Ehlers-Danlos vascular (VEDS). Aprenda de expertos médicos y obtenga respuestas a sus preguntas. Our Spanish-Language Summit is happening on January 25. Please save the date and share with everyone you know who may be interested in this opportunity to attend a virtual symposium conducted entirely in Spanish. #Marfan #LoeysDietz #VEDS #EnEspa?ol
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Very last chance to register! This Saturday, learn more about living better with Loeys-Dietz, VEDS, Marfan and related conditions. Meet the experts. Enjoy time with community! Register now: https://ow.ly/F5Ou50U1Gce
New Jersey Regional Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS - Marfan Foundation
https://marfan.org