All Things Kabuki

All Things Kabuki is a registered 501(c)3 non-profit dedicated to supporting families affected by Kabuki syndrome.

[All Things Kabuki @AllThingsKabuki]

Kabuki Mom, Betsy Jackson, is running the 123rd BOSTON MARATHON on April 15th! She has raised 69% of her $10,000 fundraising goal, benefiting Kabuki Syndrome Research! 🧬 Betsy is doing… https://t.co/j9tPjUgAFn

[All Things Kabuki @AllThingsKabuki]

Today is RARE DISEASE AWARENESS DAY! Tell us how you celebrated and shared about rare.
#rarediseasemonth #kabukisyndrome #allthingskabuki #rareisbeautiful #advocate #awareness #themoreyouknow #wrdd2019 #wearerare #careaboutrare #february28 #rarediseaseawarenessday

[All Things Kabuki @AllThingsKabuki]

🦓 World Rare Disease Day is held on the last day of February each year.
#rarediseasemonth #kabukisyndrome #allthingskabuki #rareisbeautiful #advocate #awareness #themoreyouknow #wrdd2019 #wearerare #careaboutrare

[All Things Kabuki @AllThingsKabuki]

A disease can be rare in one region and common in another.
#rarediseasemonth #kabukisyndrome #allthingskabuki #rareisbeautiful #advocate #awareness #themoreyouknow #wrdd2019 #wearerare #careaboutrare

[All Things Kabuki @AllThingsKabuki]

Finding a support group is important! A rare disease can be isolating for the patient and their caregiver, especially when it’s your child that has the disease.
#rarediseasemonth #kabukisyndrome #allthingskabuki #rareisbeautiful #awareness #themoreyouknow #wrdd2019 #careaboutrare

[All Things Kabuki @AllThingsKabuki]

🦓 Rare Disease Awareness Month 🦓
#rarediseasemonth #kabukisyndrome #allthingskabuki #rareisbeautiful #advocate #awareness #themoreyouknow #wrdd2019 #wearerare #careaboutrare

[All Things Kabuki @AllThingsKabuki]

🦓 There is no cure for most rare diseases, but appropriate treatment and medical care can improve the quality of life of those affected.
#rarediseasemonth #kabukisyndrome #allthingskabuki #rareisbeautiful #advocate #awareness #themoreyouknow #wrdd2019 #wearerare #careaboutrare

[All Things Kabuki @AllThingsKabuki]

Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease.
#rarediseasemonth #kabukisyndrome #allthingskabuki #rareisbeautiful #advocate #awareness #themoreyouknow #wrdd2019 #wearerare #careaboutrare

[All Things Kabuki @AllThingsKabuki]

🦓 Rare Disease Awareness Month 🦓 Low muscle tone is common in Kabuki syndrome.
#rarediseasemonth #kabukisyndrome #allthingskabuki #rareisbeautiful #advocate #awareness #themoreyouknow #wrdd2019 #wearerare #careaboutrare

[All Things Kabuki @AllThingsKabuki]

Only 5% of rare diseases have FDA approved treatment. Access to treatment is an ongoing struggle due to high costs and variability.
#rarediseasemonth #kabukisyndrome #allthingskabuki #rareisbeautiful #awareness #themoreyouknow #wrdd2019 #careaboutrare

[All Things Kabuki @AllThingsKabuki]

Rare Disease Awareness Month 🦓 Hundreds of variants have been identified with the KMT2D gene, while only a handful have been identified with the KDM6A gene. #rarediseasemonth #kabukisyndrome #allthingskabuki #rareisbeautiful #awareness #themoreyouknow #wrdd2019 #careaboutrare

[All Things Kabuki @AllThingsKabuki]

🦓 Rare Disease Awareness Month 🦓 Rare diseases affect 30 million Americans (1:10) and 350 million people worldwide.
#rarediseasemonth #kabukisyndrome #allthingskabuki #rareisbeautiful #advocate #awareness #themoreyouknow #wrdd2019 #wearerare #careaboutrare

[All Things Kabuki @AllThingsKabuki]

🦓 Rare Disease Awareness Month 🦓 The term orphan disease implies two separate but related concepts.
#rarediseasemonth #kabukisyndrome #allthingskabuki #rareisbeautiful #advocate #awareness #themoreyouknow #wrdd2019 #wearerare #careaboutrare

[All Things Kabuki @AllThingsKabuki]

🦓 Rare Disease Awareness Month 🦓 Children with Kabuki syndrome often experience delayed bone growth. Bone age can be confirmed through x-ray.

#rarediseasemonth #kabukisyndrome #allthingskabuki #rareisbeautiful #advocate #themoreyouknow #wrdd2019 #wearerare #careaboutrare

[All Things Kabuki @AllThingsKabuki]

🦓 Rare Disease Awareness Month 🦓 Approximately 50% of people affected by rare disease are children.
#rarediseasemonth #kabukisyndrome #allthingskabuki #rareisbeautiful #advocate #awareness #themoreyouknow #wrdd2019 #wearerare #careaboutrare

[All Things Kabuki @AllThingsKabuki]

🦓 Rare Disease Awareness Month 🦓

Most children with Kabuki syndrome are born at a normal height and weight. Growth delays often occur postnatal.

#rarediseasemonth #kabukisyndrome… https://t.co/rQ97izYcBZ

[All Things Kabuki @AllThingsKabuki]

The Orphan Drug Act in the USA (1983) was succeeded by similar legislation in Japan (1985), Australia (1997) and the European community (2000).
#rarediseasemonth #kabukisyndrome #allthingskabuki #rareisbeautiful #advocate #themoreyouknow #wrdd2019 #careaboutrare

[All Things Kabuki @AllThingsKabuki]

🦓 Rare Disease Awareness Month 🦓 The first gene recognized to be responsible for Kabuki syndrome was discovered in 2010 at the University of Washington.

#rarediseasemonth #kabukisyndrome #allthingskabuki #rareisbeautiful #advocate #themoreyouknow #wrdd2019 #careaboutrare

[All Things Kabuki @AllThingsKabuki]

🦓 Rare Disease Awareness Month 🦓 95% of rare diseases do not have a single FDA approved drug treatment or cure, including Kabuki syndrome.
#rarediseasemonth #kabukisyndrome #allthingskabuki #rareisbeautiful #advocate #awareness #themoreyouknow #wrdd2019 #careaboutrare

[All Things Kabuki @AllThingsKabuki]

🦓 Rare Disease Awareness Month 🦓 Kabuki syndrome is a rare genetic disorder occurring in approximately 1 in 32,000 births worldwide.
#rarediseasemonth #kabukisyndrome #allthingskabuki #rareisbeautiful #advocate #awareness #themoreyouknow #wrdd2019 #wearerare #careaboutrare