finding a voice

http://www.capwiz.com/rarediseases/home/

If you are reading my blog today, I would like to request that you take a moment to follow the link. There is a very simple letter template which will allow you to contact both President Obama and your state representatives to request more funding, attention, research, etc. be paid to individuals with rare disorders.  This is a very important issue, as you know, for my family and for thousands of families like us with difficulty accessing the therapy, treatments, insurance benefits and often the diagnoses they so desperately need.

Thank you.