Rare Disease Day - What we can do

[Guest guest]

Each one of us with CMT can do our part to promote the goals of Rare

Disease Day February 28, 2009.

Simple Ideas:

1) Email your Congresspersons about the day and ask for their support,

especially for CMT.

2) Email your State Governor and request that February 28 be designated

as Rare Disease Day in your state.

3) Contact your local newspaper about Rare Disease Day and what it is

like to live with CMT.

4) Contact your local television stations about the Day and ask for a

story on Rare Diseases, share your story about CMT.

For sample news releases and more information, go to

http://www.rarediseaseday.org/

also info at

http://rarediseases.info.nih.gov/GARD/Search.aspx?PageID=1 & keywords=charcot+mari\

e+tooth

This campaign will not only create more awareness for Rare Diseases (and CMT, if

you participate) but will also increase government grants funding for research,

including research for CMT.

For our members living outside the USA, you may also become involved, just

select your country at http://www.rarediseaseday.org/

Thanks,

Gretchen