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Rare is Beautiful is Back!
Get your Rare is Beautiful tees, toddler shirts, pull overs and zip up hoodies now ... before Kabuki Syndrome Awareness Month. This...
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Rene King
- Aug 1
- 1 min
Kabuki Syndrome Registry is Live
All Things Kabuki and the National Organization for Rare Disorders launched the first-ever patient registry for Kabuki Syndrome today,...
217 views0 comments
Rene King
- Apr 23
- 1 min
Join Team Kabuki Friends for the 2022 BCH Walk
We invite the Kabuki Syndrome community, friends and family to join Team Kabuki Friends for the 2022 Eversource Walk for Boston...
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Rene King
- Mar 2
- 1 min
NEW Kabuki Syndrome Booster
ATK's newest booster Kabuki Syndrome is live now through March 15th. Get your Toddler, Youth, Unisex, Women's, Tank or Hoodie before it...
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Rene King
- Mar 2
- 1 min
Join Team Kabuki Friends for the 2022 BCH Walk
It's that time ya'll! Registration for the 2022 Eversource Walk for Boston Children's Hospital is underway. We invite the global Kabuki...
26 views0 comments
Rene King
- Jan 25
- 1 min
Family Resources: Medical Trauma Flyer
ATK is pleased to announce the launch of our Family Resource Program. Another amazing friend, Kabuki mom and new volunteer has taken the...
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Rene King
- Jan 24
- 1 min
ATK Launches Advocacy Outreach Program
We are so excited about everything going on behind the scenes at ATK! We have a few programs launching this year and are eager to engage...
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Rene King
- Jan 24
- 1 min
We Stand With Rare Booster now available
ATK's 2022 Rare Disease Month booster is live now through February 2nd. Anticipated delivery date is February 18th. We did not have a lot...
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Rene King
- Jan 24
- 1 min
2022 Clinical Flyer
ATK's 2022 Clinical Flyer is now available to download or share with medical providers / offices in your area. PDF is available at...
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Rene King
- Jan 9
- 1 min
Family Spotlight | January 2022
Meet our sweet friend, Zia-Louise of New Zealand. You can read her about her journey with Kabuki Syndrome at: allthingskabuki.org/zia-lou...
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Rene King
- Jan 9
- 1 min
Takeda Survey Results Published
Did you participate in Takeda Pharmaceutical's 2018 survey? They recently shared the publication related to that data with us. You can...
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Rene King
- Jan 9
- 1 min
Hypotonia and Kabuki Syndrome
Have you participated in the Hypotonia research opportunity at BCH? It's not too late! Here's another publication we received, by some of...
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Rene King
- Jan 3
- 1 min
ATK Closed Due To Severe Weather
All Things Kabuki is currently closed due to severe weather conditions with frequent power outages. The Mat-Su Borough Mayor has declared...
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Rene King
- Dec 9, 2021
- 1 min
Serra Kia (AL) Supports KS Awareness
You never know who you might touch by simply sharing your story! Kabuki Dad, Jeff Clay, was elated when he learned that his employer...
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Rene King
- Dec 9, 2021
- 1 min
Kabuki Syndrome in the News | Canada
Check out this fabulous article, featured in our December newsletter! The writer, ATK volunteer Randy Pinsky, shared this write up on...
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Rene King
- Dec 3, 2021
- 1 min
Coffee & Cookies ... for a cause!
THEY'RE BACK! Kabuki Coffee and Chocolate Covered Oreos are now back in stock! Many options to choose from for local (Alaska delivery)...
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Rene King
- Oct 5, 2021
- 1 min
One Rare Heart features Kabuki Syndrome
One Rare Heart podcast publishes it's latest episode exploring Kabuki Syndrome. Derren dedicates this episode to his beautiful daughter,...
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Rene King
- Oct 2, 2021
- 1 min
Zebra Gnomes available now!
These adorable, custom made gnomes are available in the ATK store while supplies last. Why a zebra pattern rather than green? The zebra...
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Rene King
- Sep 16, 2021
- 1 min
Rare is Beautiful is BACK!
ATK's 2013 Rare is Beautiful shirt is back, with a twist. :) This booster is open through Sunday, September 26th. Orders should be at...
28 views0 comments