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January 23, 2021
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Plymouth Family Raises Awareness for Rare Disease

April 5, 2020April 5, 2020 - by siggi

Having a child changes your life. One family in Plymouth was overjoyed to welcome a baby girl into their life. However, their joy quickly turned to concern once their daughter, …

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Associations / Interviews / News

ATP1A3 Symposium in Disease – Reykjavik 2019

February 10, 2020February 10, 2020 - by siggi

The ATP1A3 Symposium in Disease was held in Reykjavik, Iceland on October 2-4th 2019 The President of Iceland, Gudni Th. Jóhannesson opened the symposium with a message that we should …

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Interviews / News

There was no cure for their daughters rare condition

September 15, 2019September 15, 2019 - by siggi
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News

Carmel Hartman in the news

June 1, 2019June 1, 2019 - by siggi

Carmel daughter of Sophie Hartman in the news

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News / Presentations

A wish mom’s story: Sophie

April 1, 2019April 1, 2019 - by siggi

Wish mom Sophie shares her family’s story and how her daughter’s (Carmel) wish transformed their lives.

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Interviews / News

Carmel in a Make-A-Wish Interview

March 30, 2019March 30, 2019 - by siggi

Carmel is an amazing little girl battling Alternating Hemiplegia of Childhood. She was able to Make-A-Wish in 2017 and she was chosen to be the featured wish for WISH NIGHT …

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Interviews / News

My one-in-a-million daughter

March 23, 2019March 23, 2019 - by siggi

Nineteen month old Anya suffers from a rare neurological disorder which causes paralyses down one side of her body, tremors and breathing problems. https://www.bbc.co.uk/programmes/p074bd2m?fbclid=IwAR3XhL_3Mak6xpV5txrOU0DNExZbNPvYPP5zR_zuZLBjEHuQUlXC_593JKY The condition affects just one in …

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Interviews / News

Fiorella Gurrieri at the ATP1A3 Symposium in Disease, Chicago 2018

November 24, 2018November 24, 2018 - by siggi

Professor Fiorella Gurrieri tells us about an exciting new project that she is working on. Gurrieri´s research group is doing research with cell lines that have 5 of the ATP1A3 …

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News

Catherine Brownstein – ATP1A3 Symposium in Disease, Chicago 2018

November 18, 2018 - by siggi

Dr. Brownstein is an Instructor of Pediatrics at Harvard Medical School, a Research Associate in Genetics and Genomics at Boston Children’s Hospital, and the Manager of the Molecular Genomics Core …

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Associations / Interviews / News

AAV gene therapy for AHC – Any donation is a step forward

November 4, 2018November 4, 2018 - by siggi

Please support this campaign: Go Fund Me Simon Frost, father to Annabel Frost, tells us how YOU can help shape the future for thousands and possibly millions og people by …

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Recent Posts

  • Dr. Al George – AHC interview 2019 – Reykjavik, Iceland
  • Dr. Steven Gray – ATP1A3 symposium in Reykjavik, Iceland
  • Sho Yano – ATP1A3 symposium in Reykjavik, Iceland
  • Hanne Poulsen – ATP1A3 symposium in Reykjavik, Iceland
  • Karin Lykke-Hartmann – ATP1A3 symposium in Reykjavik

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