Rare Disease Day is Today.....February 28th

Real Estate Agent with RE/MAX Advantage South


Rare Disease Day is Today......February 28th


I read about this on my friend Michele's Facebook page this morning.  She says "A disease isn't rare if it's happening to you.  Visit miracle4will.com and support my nephew's cure!"  Will Luthcke suffers from a fatal genetic disorder named Sanfilippo Syndrome.  There is currently no cure or treatment.  I've written about Will before.....links to those posts are here and here.


Rare Disease Day is an annual event to inform and remind the public, health professionals and policy makers that research is needed to give hope to patients and their families that have been diagnosed with a rare disease.  Coordinated by EURORDIS and National Alliances of Patient Organisations, the day is recognized in countries around the globe as they partner to search for ways to improve the lives of those affected by rare diseases.


What is the definition of a rare disease?  80% of rare diseases are genetic in origin and 75% of those affected are children.  Rare diseases have no known cure.  They can be chronic, degenerating and life-threatening.  30% will die before they are five years old.  Click here for more info about rare diseases and what can be done to help.







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Courtesy of Ann Allen, e-PRO®, SRES, ASP


Keller Williams

One Chase Corporation Drive, Suite 150

Hoover, AL  35244



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Team Honeycutt
Allen Tate - Concord, NC

I have never heard of Rare Disease Day but it surely is a good idea.  Your friend is right in that when it happens to us it isn't rare.

Feb 28, 2010 04:18 AM #1
Nick T Pappas
Assoc. Broker/Broker ABR, CRS, SFR, e-Pro, @Homes Realty Group, @HomesBirmingham & Providence Property Mgmnt, LLC Hun... - Huntsville, AL
Madison & Huntsville Alabama Real Estate Resource

Ann, I also have never heard of "Rare Disease Day".  I'm commenting because a client just told me about a young family member who has been diagnosed with Kawasaki Disease, another rare disease that affects approximately 19 in 100,000, mostly children. 

Feb 28, 2010 05:13 AM #2
Laura Cerrano
Feng Shui Manhattan Long Island - Locust Valley, NY
Certified Feng Shui Expert, Speaker & Researcher

Ann, I've heard of rare diseases of course but not a day set aside.  Hopefully this will bring awareness to many so they can learn more about them and hopefully, someday, cure them.

Feb 28, 2010 08:52 AM #3
Lee & Pamela St. Peter
Berkshire Hathaway HomeServices YSU Realty: (919) 645-2522 - Raleigh, NC
Making Connections to Success in Real Estate

Ah, Ann, thanks for information all of us about Rare Disease Day.  There are so many that suffer such terrible illness in our world.  We send along our support and our prayers.

Mar 01, 2010 12:41 AM #4
Russel Ray, San Diego Business & Marketing Consultant & Photographer
Russel Ray - San Diego State University, CA

I wonder why Rare Disease Day didn't show up on my daily email. Thanks for the several links.

Mar 01, 2010 06:41 PM #5
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Ann Allen Hoover

CDPE SRES ASP e-PRO Realtor - Homes for Sale - AL
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