Norrie Notes

How Does Online Networking Help You?

2010-03-25T13:03:00.001-04:00

An article in the New York Times this week highlighted the benefits (and some caveats) of online social networks for medical communities. People with a wide range of health issues are participating in "big patient networking sites like PatientsLikeMe, HealthCentral, Inspire, CureTogether and Alliance Health Networks" that are run by private companies and offer platforms for sharing everything from hard data to soft stories. Others turn to "small sites started by patients on networks like Ning and Wetpaint".

The Norrie Disease Yahoo Group is a simple version of a small, patient-driven social community that communicates primarily by messages on a gated listserv. It is the only online community we know of that is dedicated to individuals and families affected by Norrie Disease.

If you have had success with another online networking service, we'd love to hear about it! Please share your experiences in the comments section.

Winning Insurance Coverage for Hearing Aids

2009-10-09T21:11:00.001-04:00

A nine-year-old girl and her mother won insurance coverage for children in New Jersey after many years of dealing with lawmakers, lobbyists, and insurance companies. "Grace's Law" (signed in 2008) requires that all state insurance companies in the state cover up to $1,000 "for each hearing aid prescribed for children 15 and under".

Read the inspiring story on the Healthy Hearing blog!

Group Photo Album

2009-10-05T22:02:00.002-04:00

Check out our new flickr photo group, NDA Conference 2009!

Anyone can join the group to add photos, so feel free to upload as many as you want. We'd love to see the conference from your perspective, too!

JOIN THE FLICKR PHOTO POOL!

http://www.flickr.com/groups/nda2009/

1. Click “Join?”
• Sign into flickr with your Yahoo ID and password

2. Join group

3. Add photos or video

4. Select items or add new

5. Upload something now: Choose photos

6. Choose one or a group of photos from your computer
• First, transfer your photos from your camera to a folder on your computer
• Find your photos using the “Look in:” dropdown menu at the top of the box
• Highlight as many photos as you want by dragging the mouse or using shift+arrow keys
• Click “Open” to upload to your online flickr account

7. Choose one or a group of photos from your computer
• Click “Add More” if you would like to add more photos to the upload
• Click trash can icon to discard any unwanted uploaded photos
• Set the privacy option to “Public”
• Upload your photos (this will take a few minutes for a large group of photos)

8. Add a description
• Click “add a description”
• Type in a description and save

9. Find the NDA Conference group
• Groups-->Your Groups-->NDA Conference 2009

10. Repeat Step 3: Add photos or video

11. Click on pictures to add to the group
• Click “Add to Group” button at the bottom when finished selecting photos

12. See your new pictures in the NDA Conference 2009 group album!

(Preview slide show is shown on the right margin of this blog)

Nissan Helps Pedestrians Hear Electric Cars

2009-09-19T15:39:00.006-04:00

Nissan keeps the safety of children, elderly, and blind pedestrians in mind as it designs its new electric car, the Leaf. It breaks from the tradition of other near-silent electric cars by installing a futuristic sound. According to Bloomberg News:

The company consulted Japanese composers of film scores. What Tabata and his six-member team came up with is a high-pitched sound reminiscent of the flying cars in “Blade Runner,” the 1982 film directed by Ridley Scott portraying his dystopian vision of 2019.

You can hear the prototype's whir in the Blade Runner video clip.

Refreshable Braille Demo

2009-08-25T21:00:00.002-04:00

Bruce Maguire describes how he uses refreshable Braille to browse the internet. Watch the video or read the transcript.
(from Roger Hudson of Web Usability)

Website Construction

2009-03-10T21:00:00.003-04:00

Thank you for your patience as we build our organization and our website. We endeavor to post the most important information in an accurate and timely manner.