TheMommyBlog

Thursday, February 26, 2009 Family, Life, Children's Health, Moms Like Us

I’m swerving off my usual sarcastatrack to talk about something that touches an astonishing number of families given the word “rare” in the description. This Saturday is World Rare Disease Day, and they have very simple objectives for 2009:

The main objective of Rare Disease Day 2009 is to raise awareness with policy makers and the public of rare diseases and of their impact on patients’ lives. Other main objectives of Rare Disease Day are to:

• Raise awareness on rare diseases
• Strengthen one voice of patients
• Give hope and information to patients
• Bring stakeholders closer together
• Coordinate policy actions in different countries
• Inspire continued growth of the awareness of rare diseases
• Get equity in access to care and treatment

Awareness raising events will take place in each participating country. To find out what is happening in your country, click here.

If that seems like a mouthful, at least watch this video about Baby Hannah, whom I want to snuggle and tickle and take home with me until I remember she is in the very best and loving hands already. You may want to grab a box of tissues. first.