Download RARE DISEASE DAY: - Calendar

[SAMPLE LETTER TO THE EDITOR – where info is in red, you will need
to personalize before sending, include a photo of your child if you are able]
Date
To the Editor:
I am writing to let your readers know about a special day that’s coming up soon. On
Saturday, May 14, thousands of people around the country will observe National Cornelia
de Lange Syndrome (CdLS) Awareness Day. Since 1989, the second Saturday in May
has been designated as such in order to focus attention on this little-known genetic
condition.
This day has special meaning to me and my family because TALK ABOUT THE CHILD
WITH CdLS IN YOUR LIFE. THE CHALLENGES, THE VICTORIES, ETC. DON’T
MAKE IT TOO LONG.
It’s likely that your readers—even those in the health professions—have never heard
about CdLS, but it’s important for them to learn. That’s because CdLS goes undiagnosed
in thousands of men, women and children, leaving them without medical monitoring for
complications unique to the syndrome, like bowel obstructions, seizures and silent reflux.
I encourage your readers to visit the CdLS Foundation web site, www.CdLSusa.org, to
view photos of children with CdLS and learn more about the condition
Sincerely,
Your name
Contact information