News for Jan. 3, 2009 (V 1.1.7)

ECD knowledgeable physicians from Singapore and the United States were added to the ‘Physicians’ page.

An article entitled, “Case 572 — A 60 year old woman with an extra-axial frontal mass” was added to the ‘Published Papers | Medical Journal Articles’.

Additional abstracts were added to the ‘Abstracts of Published Papers’ list found under the ‘Published Papers | Abstracts of Published Papers’ selection.  This brings the list up to date through the middle of December, 2008.

Additional links were added to the ‘Resources | Links’ selection for Air Care Alliance and Angel Flight which are organizations that help patients who are in need to find air transportation.  A link was added for an online magazine, But You Don’t Look Sick, that focuses on living life to the fullest.

A new ‘Books’ selection was added to the ‘Resources’ selection.

A link to a TV news segment about an ECD patient who has recently learned to scuba dive was added on the ‘Patient to Patient’ selection.

A new ‘Chat Room’ selection was added to the main menu selection.  With this change of menu structure, summaries from past online chats have also been included.

Just a reminder that Rare Disease Day will be on February 28, 2009.   Some of our members are beginning to plan activities to raise awareness.  These activities include (1) having an event; (2) writing an article for your local newspaper explaining what it is like to live with a rare disease; (3) writing a letter to the governor of your state requesting he/she formally declare and recognize the day.  If you are interested in participating to help make this day productive, you might want to select the Rare Disease Day icon on the main selection location.  This will take you to the NORD website where you can find ideas about what you might do in your local community.

Finally, some broken links were repaired.