If you were a pregnant woman living in the United States, would you travel to Germany during a pandemic for a potential treatment for your unborn son’s rare disorder? That’s exactly what a woman named Emily did last year.

We are excited to share with you a new video that the University Hospital Erlangen in Erlangen, Germany released. They interview Emily and talk about her experience in having her son treated for x-linked hypohidrotic ectodermal dysplasia (XHLED) in utero by Prof. Holm Schneider.

Watch as Emily tells her story and the challenges of traveling during the pandemic. It’s her hope that the protein therapy will give her son what her father with XLHED does not have: working sweat glands.

Stay tuned for more on Emily’s story in the coming months and years to learn if the treatment had significant effects for her son.

Upcoming Clinical Trial

Later this year, EspeRare and Pierre Fabre plan to launch a clinical trial to further test the treatment in a greater number of males affected by XLHED in utero. They seek to confirm Prof. Schneider’s earlier findings in which three boys who received it developed normal sweat glands and had other improved symptoms.

We’ll keep you updated when more information is available.

Share the Good News

Watching Emily’s story is a great way to celebrate International Ectodermal Dysplasias Awareness Day, which is tomorrow! We encourage you to share the video on your social media.

Join with us in imagining a future – one that may not be that far away – when babies with XLHED could be born with working sweat glands!

(Disclaimer: This video’s sole purpose is to share the testimony of an individual case. The treatment mentioned in the video is still undergoing clinical development.)

2 comments on “Pregnant Mom Travels Around the World For Her Unborn Son”

  1. 1
    Kristina on April 23, 2021

    So proud of you Emily and thankful for NFED and Dr Prof. Schneider’s work. My nephew is a huge blessing and knowing you were all there to help support and make this a reality is so incredible. Thank you everyone for your continued efforts towards a cure, for my daughters, future grandchildren, nephews and nieces. Thank you!!

    1. 2
      Kelley Atchison on May 6, 2021

      Thank you, Kristina. We are thankful to travel this journey with Emily as well as her immediate and extended family. Your nephew is a cutie!

      Kelley Atchison
      NFED, Director, Family and Community Programs

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