February 28, 2011 is Rare Disease Day throughout the world. This year’s theme is “Rare but Equal” which will highlight rare diseases and health inequalities. On that day hundreds of patient organizations from more than 40 countries worldwide will be organizing awareness-raising activities and converging around the slogan “Rare but Equal”. This year the International Foundation for CDKL5 Research is proud to take part in this day.
CDKL5 is a rare disease. It is an X-linked genetic disorder that results in early onset, difficult to control seizures and sever neuro-developmental impairment. There are fewer than 200 cases worldwide. Most children affected by CDKL5 suffer from seizures that begin in the first few months of life. Most cannot walk, talk or feed themselves, and many are confined to wheelchairs, dependent on others for everything.
This year, the focus of Rare Disease Day is to bring attention to the difficulties that individuals and families go through that suffer from a rare disease. The IFCR is asking for your help in acknowledging Rare Disease Day. Please take a moment to read about some of the opportunities offered.
Become an Ambassador at http://rarediseaseday.us/take-action-now/become-a-partner/
Tell your story at http://rarediseaseday.us/take-action-now/tell-your-story/
If you or a family member is affected by a rare disease, create a video. You can view sample videos at http://www.youtube.com/raredisorders
Write to your representatives. To view sample letters go to http://rarediseaseday.us/take-action-now/write-your-reps/
Participate in an event near you. For information on what may be happening in your community go to http://rarediseaseday.us/events/events/
Join on Facebook and Twitter. You can use your status to raise awareness for Rare Disease Day.