Friday, February 28, 2014

Rare Disease Day 2014

Switching gears from NEDAwareness Week. . .

Today, February 28th, is Rare Disease Day!

What is a rare disease?

A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.

50% of rare diseases touch children.


Cohen Syndrome has only 1,000 documented cases. Globally, we only have data on 160 cases. Clara is one of 1,000. Rare, indeed.

I will never forget the day we learned of Clara's Cohens and the geneticist looked me in the face and said verbatim "You really don't understand how rare this diagnosis is."

Let's raise and join hands together in support of not only Clara, but for many others living with a rare disease.

Thank you for taking the time to love these kids, these people, these families, and those who work so very hard, everyday, to create the best scenarios and outcomes possible for those diagnosed.

Thank you for your support. 

It truly means more than you know. 


  1. Thank you for bringing issues like these to our attention and for sharing what you learn so that we can all learn more, too!

  2. Yes, as The Joiners said, thank you for bringing this to our attention and for being so open and honest with what you have learned and face. You, and your beautiful family, are a blessing to so many both in person and via your blog. Thank you.

  3. Ditto to what Amanda said. God is using you and your blog in great ways!

  4. Love you and your beautiful family! Thank you for your compassionate heart and for sharing and--in turn--inspiring so many others. Many blessings to you!

  5. Love you & your precious family! I am so honored to be your friend & see how the Lord is using you & Clara to glorify His name!


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