BBSOAS

REN
Posted by | April 8, 2022
NR2F1 Foundation is a New Member of the Rare Epilepsy Network

The NR2F1 Foundation has joined the Rare Epilepsy Network, a collaborative effort of rare epilepsies. Because over 50% of individuals with BBSOAS are also diagnosed with epilepsy, being part of...

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at the top it says BBSOAS Grandparent Support Group. in the middle are 3 images of grandparents with their BBSOAS grandchild. under the pictures it says Talk with other BBSOAS grandparents to share ideas, resources and support. Contact Donna at d o r l i n e r at c o m c a s t dot n e t
Text says Meet Zeb. Zeb is diagnosed with BBSOAS. Watch the exclusive and first time interview with Carlie President of the NR2F1 Foundation. in the middle is an up close picture of Zeb a young man, wearing a pink t-shirt and holding a mug in his hand and smiling at the viewer
Posted by | November 18, 2021
Meet Zeb! An exclusive interview

Click the image to watch the video.   Meet Zeb from the Netherlands, a young man who lives with a very rare NR2F1 disease caused by a NR2F1 gene variant,...

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Image contains 5 graphics depicting 5 countries including France, the U.K., the U.S.A, Germany and the Netherlands. in the center is a graphic of 5 hands reaching towards each other touching fingers in a circle
Posted by | November 18, 2021
2021 BBSOAS Research Update

October marked the first BBSOAS collaborative research meeting with Michele Studer (France), Patrick Yu Wai Man (England), Danielle Bosch and Ninke Boonstra (Netherlands), Veeral Shah, Jane Edmond, Nilesh Desai, Sophia...

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wording states NR2F1 Foundation Store Grand Opening with an image of a couple wearing matching BBSOAS grey sweatshirts and a girl wearing a blue BBSOAS t-shirt and a woman wearing a trucker hat that says Be Cool Be Kind alongside the DNA logo of the NR2F1 Foundation logo
a young boy wearing a grey sweatshirt is sitting on a couch with his head turned to the viewer and smiling
Posted by | November 18, 2021
Meet Simon from Chile!

Mom, Cecilia shares with us all about Simon. Cuantos años tiene Simón, y cómo  escogieron su nombre? How old is Simón and how did you choose his name? Simón tiene 4 años...

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a young girl wearing a t-shirt and hair parted down the center in two buns is sitting against a white wall with a green drape and she is smiling as she is gazing slightly down
Posted by | November 18, 2021
Meet 4 yr old Emma!

Mom Ashlee shares with us all about Emma. How did you choose the name Emma? Her first name was chosen before we even started the process to have her. Emma...

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Charly, a young man with a beard wearing a navy hoodie is sitting outside on a white bench at a restaurant surrounded by plants
Posted by | November 18, 2021
Meet Charly from Lyon, France!

Angélique shares with us all about Charly from Lyon, France. (Translated into English by Carlie Monnier) Comment avez-vous choisi le prénom de Charly? (How did you choose the name Charly?)...

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Posted by | November 18, 2021
Meet 4 yr old Ebony from Australia!

  Mom, Kristy shares with us all about Ebony.  How did you choose the name Ebony? We had a list of names that we liked but we couldn't decide so...

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