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The Web's Daily Resource for Epidermolysis Bullosa News

In the 06/14/2022 edition:

NORD’s ‘Living Rare, Living Stronger’ Patient, Family Forum Set for June 26

By Mary Chapman on 06/10/2022

National Organization for Rare DisordersThe National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference Center and will feature the 2022 […]

The post NORD’s ‘Living Rare, Living Stronger’ Patient, Family Forum Set for June 26 appeared first on Epidermolysis Bullosa News.

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Watching My Son Deal With the Never-ending Pain of EB

By Patrice Williams on 06/09/2022

Epidermolysis Bullosa News |Main graphic for column titled "Fragile but Fierce," Epidermolysis Bullosa News, by Patrice WilliamsI heard my son Jonah sigh as he sat in the stadium seat beside me at Friday night’s minor league baseball game in our hometown. It was his pain sigh. I know it well. Here we were again at an event that should be all fun, and he couldn’t even enjoy it. “What’s the matter, […]

The post Watching My Son Deal With the Never-ending Pain of EB appeared first on Epidermolysis Bullosa News.

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When Traveling With a Skin Condition Like EB, Preparation Is Key

By Lena Riedl on 06/08/2022

share | Epidermolysis Bullosa News | banner for "Girl With the Butterfly Tattoo" by Lena Riedl“A journey of a thousand miles begins with a single step.” – Laotzu I just finished packing my bags for my first flight in more than two years. (Yay, we can travel again!) But while a trip may begin with a single step for some, traveling requires many more steps and considerations for those of […]

The post When Traveling With a Skin Condition Like EB, Preparation Is Key appeared first on Epidermolysis Bullosa News.

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