CADASIL TOGETHER WE HAVE HOPE

Rare Disease Day

14 DAYS TO GO

  Together We Can Raise Awareness!

Write a letter to your local newspaper editor telling them about Rare Disease day.

  

Display the below flier in the library, schools, hospitals, doctors offices, mental health agencies, churches, health departments, community bulletin boards, senior centers, clubs you or your friends belong to or anywhere else you could think of.  
 
CADASIL NORD Information

 

Across the U.S., patients and their families are sharing their stories. Submit your video online.

This video was created for Rare Disease Day: Coping with CADASIL click on the picture below: 

Coping with CADASIL
Coping with CADASIL

Click here to view other videos and submit yours


Rare Disease Day Partners will host special awareness events and activities from all over the world, supporters will be voicing the same themes.

 

If you would just like to share how you are observing the day please e-mail us at info@cadasilfoundation.org

Thank you in advance for reading this news update.

 

Fifth International Rare Disease Day- "Rare but Strong Together"

February 29, 2012 is Rare Disease Day. All over the world, rare disease patient organizations and their partners will join forces to promote awareness about rare diseases and the millions of people affected by them..

In 2012, Rare Disease Day will put the spotlight on "Solidarity", a value that characterizes the rare disease patient movement across diseases and national boundaries. The theme also serves to focus on the importance and the need for collaboration and mutual support in an area where patients are rare, expertise is scarce and people affected face similar challenges.

"This year marks the 5th anniversary of Rare Disease Day," said Peter L. Saltonstall, president and CEO of NORD. "The event has grown every year and was observed in more than 60 nations last year. The purpose is to raise awareness of rare diseases as an important public health issue."

Facts about Rare Diseases

  • Rare diseases affect millions of people.
     
  • (In the U.S. alone, an estimated 30 million people are affected.)
     
  • Getting a diagnosis is difficult and often takes many years.
     
  • Most rare diseases have no treatment. (Of the 7,000 diseases considered rare in the U.S., only about 200 have approved therapies.)
     
  • Many rare diseases are not being studied by medical researchers.
     
  • More than half of the patients are children, and rare diseases tend to be serious, complex and chronic.
 
CADASIL TOGETHER WE HAVE HOPE NONPROFIT ORGANIZATION
1-877-519-HOPE or 512-255-0209
Round Rock, Texas 78681
info@cadasilfoundation.org