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المحتوى المقدم من Katie Wright. يتم تحميل جميع محتويات البودكاست بما في ذلك الحلقات والرسومات وأوصاف البودكاست وتقديمها مباشرة بواسطة Katie Wright أو شريك منصة البودكاست الخاص بهم. إذا كنت تعتقد أن شخصًا ما يستخدم عملك المحمي بحقوق الطبع والنشر دون إذنك، فيمكنك اتباع العملية الموضحة هنا https://ar.player.fm/legal.
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Maggie Buckley

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Manage episode 433325948 series 2295478
المحتوى المقدم من Katie Wright. يتم تحميل جميع محتويات البودكاست بما في ذلك الحلقات والرسومات وأوصاف البودكاست وتقديمها مباشرة بواسطة Katie Wright أو شريك منصة البودكاست الخاص بهم. إذا كنت تعتقد أن شخصًا ما يستخدم عملك المحمي بحقوق الطبع والنشر دون إذنك، فيمكنك اتباع العملية الموضحة هنا https://ar.player.fm/legal.

In this episode we’re going to talk to Maggie Buckley, a long-time member of the community who was diagnosed with hypermobile EDS when she was a child. Recently, a genetic test revealed she has the gene mutation for Loeys-Dietz type 5.

If you want to know what an okapi is, check out this info here.

Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org.

If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit

https://calendly.com/d/z7h-2cc-g33

Links to resources, events, and research opportunities:

VEDS Collaborative Research Study: Email vedscoll@ohsu.edu

Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events:

https://marfan.org/calendar

Join a Walk for Victory:

https://marfan.org/walk/

Help and Resource Center
https://marfan.org/ask

https://loeysdietz.org/ask

https://thevedsmovement.org/ask

Support

Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products

You can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:

Jon Holtom
Adventuresinlove4Andie
Ashton Tanner
Ryan Rodarmer
Benjamin Weisman

Disclaimer

The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer.

Source

  continue reading

109 حلقات

Artwork
iconمشاركة
 
Manage episode 433325948 series 2295478
المحتوى المقدم من Katie Wright. يتم تحميل جميع محتويات البودكاست بما في ذلك الحلقات والرسومات وأوصاف البودكاست وتقديمها مباشرة بواسطة Katie Wright أو شريك منصة البودكاست الخاص بهم. إذا كنت تعتقد أن شخصًا ما يستخدم عملك المحمي بحقوق الطبع والنشر دون إذنك، فيمكنك اتباع العملية الموضحة هنا https://ar.player.fm/legal.

In this episode we’re going to talk to Maggie Buckley, a long-time member of the community who was diagnosed with hypermobile EDS when she was a child. Recently, a genetic test revealed she has the gene mutation for Loeys-Dietz type 5.

If you want to know what an okapi is, check out this info here.

Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org.

If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit

https://calendly.com/d/z7h-2cc-g33

Links to resources, events, and research opportunities:

VEDS Collaborative Research Study: Email vedscoll@ohsu.edu

Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events:

https://marfan.org/calendar

Join a Walk for Victory:

https://marfan.org/walk/

Help and Resource Center
https://marfan.org/ask

https://loeysdietz.org/ask

https://thevedsmovement.org/ask

Support

Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products

You can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone

Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:

Jon Holtom
Adventuresinlove4Andie
Ashton Tanner
Ryan Rodarmer
Benjamin Weisman

Disclaimer

The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer.

Source

  continue reading

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مرحبًا بك في مشغل أف ام!

يقوم برنامج مشغل أف أم بمسح الويب للحصول على بودكاست عالية الجودة لتستمتع بها الآن. إنه أفضل تطبيق بودكاست ويعمل على أجهزة اندرويد والأيفون والويب. قم بالتسجيل لمزامنة الاشتراكات عبر الأجهزة.

 

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