Recommended

Why are we here?

Brian
  • By Brian · April 11, 2008
  • Journal · 38 recommendations
  • When we started this community, each of us faced important health issues in our lives. Some of us have family members with medical conditions. Many of us have medical conditions of our own. All of us ...

Support your group and raise awareness with badges

Walter
  • By Walter · June 20, 2008
  • Journal · 18 recommendations
  • Hi everyone. We added a new feature today that you can use to support your groups and the organizations that sponsor them, and get the word out about the causes that are important to you. If you visit ...

New feature - See what you've replied to

Walter
  • By Walter · April 25, 2008
  • Journal · 16 recommendations
  • Hello everyone. We just added a feature that many of you have requested - a list of all of the posts that you have replied to. To get to your list, all you need to do is: 1. Sign in 2. Click "Me" in the ...

Sometimes we make mistakes

Brian
  • By Brian · May 23, 2008
  • Journal · 14 recommendations
  • Two months ago, when we launched Inspire 2.0, we added a group called 'Team Inspire'. We did this with the best intentions: we wanted the group to be a space for new members to get oriented, ask questions ...

Welcome from TeamInspire!

TeamInspire
  • By TeamInspire · March 13, 2008
  • Journal · 14 recommendations
  • Hello, old friends and new. Today is a big day for us! We have made numerous improvements to your community, most that were suggestions from you. As you can see the site is very different then before ...

Welcome!

Brian
  • By Brian · March 13, 2008
  • Journal · 12 recommendations
  • I am pleased to present Inspire 2.0 -- the result of many months of fun and hard work. We have made numerous improvements to your community, the vast majority of which are ideas that came from you! We ...

New feature: video!

Brian
  • By Brian · June 28, 2008
  • Journal · 10 recommendations
  • I am pleased to announce that we have updated Inspire to support video. You can now share a video of yourself, videos that you find inspirational or informative, and more. I've included one of myself ...

Changes that you have requested are on the way

Beth
  • By Beth · March 28, 2008
  • Journal · 9 recommendations
  • Hello everyone. We've been hard at work on many of the great suggestions that you've sent us. This week we've been cooking up some changes to the group home page, and hope to make them public very soon ...

New feature - additional reply notifications

Walter
  • By Walter · May 5, 2008
  • Journal · 8 recommendations
  • Hello everyone. We just added a new feature to help you follow the conversations that you are participating in. You will now get a notification whenever someone replies directly to one of your replies ...

Privacy and control

Brian
  • By Brian · August 27, 2008
  • Journal · 7 recommendations
  • At Inspire, we think about privacy all the time. Virtually every web site has a privacy policy; you can read ours here: http://www.inspire.com/about/privacy/. But simply following the letter of a privacy ...

Upcoming improvements to the messaging system

Walter
  • By Walter · June 1, 2008
  • Journal · 7 recommendations
  • Hello everyone. I'm writing to let you know about some long overdue improvements that we'll be making to this site's messaging system later this week. The messages section is the most frequently visited ...

Improvements to the message system are complete

Walter
  • By Walter · June 10, 2008
  • Journal · 6 recommendations
  • Hello everyone. Just a quick note to let you know that the improvements to the message system that I wrote about previously are complete. You can check them out now. You'll notice that we've grouped your ...

"You Can't Have That or You'd Be Dead By Now!"

caringcounterparts
  • By caringcounterparts · August 31, 2007
  • Discussion in Getting a diagnosis · 6 recommendations
  • For a little bit of fun (I figured we could use it) I thought I'd start a collection of ridiculous comments from doctors that we've all received as we tried to get a diagnosis. I'll kick off the list ...

New feature - profile completeness gauge

Tasha
  • By Tasha · June 12, 2008
  • Journal · 5 recommendations
  • Greetings from TeamInspire! I'm your friendly neighborhood designer, here to tell you about some new features. You might notice that today we revamped your member homepage - https://www.inspire.com/member-home.pl ...

Loneliness

Zacolton
  • By Zacolton · May 26, 2008
  • Journal · 5 recommendations
  • My latest post is on loneliness in relation to disease. I'm wondering how others feel about this? http://jeromemorrow.wordpress.com/ For the first time in a long while I am feeling homesick. I miss my ...

Isaac's syndrome

Lynn2
  • By Lynn2 · March 23, 2007
  • Discussion in Getting a diagnosis · 4 recommendations
  • Does anyone have Isaac's syndrome or have a relative or friend who does? Also, if you are just knowledgeable about this disease... Thanks, Lynn ...

Need another source of income

Zacolton
  • By Zacolton · July 14, 2008
  • Journal · 3 recommendations
  • So I'm currently working at Blockbuster and the job is great but problem I only have enough energy to work at maximum 30 hours a week and when I head to university this winter I won't be able to juggle ...

question

jeanie379
  • By jeanie379 · February 13, 2008
  • Discussion in Getting a diagnosis · 3 recommendations
  • Hi, I've learned so much from reading everyone's posts.....this is the first email I look at each morning. I am worried right now and was wondering if anyone had heard of this problem. I had an MVD, crianotomy ...

Chromosome 18

tdhssp
  • By tdhssp · September 3, 2008
  • Discussion in Getting a diagnosis · 2 recommendations
  • Hello, my name is Velvet and my child was born in 1993 with a rare chromosome duplication known solely as tetrasomy 18p. NORD was imperative in helping me link to other individuals with similar diagnosis ...

'' IN PAIN''

shellymoon
  • By shellymoon · August 25, 2008
  • Journal · 2 recommendations
  • On Aug 25, 2008, at 3:54 PM, Shelly wrote: I am having a lot of seizures so many that my mommy is taking me back to Houston next week to see my neurolgist, I also am having migraines, was just diognosed ...

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The NORD Rare Disease Support Community connects patients, families, friends and caregivers for support and inspiration. The NORD Rare Disease Support Community is sponsored by the National Organization for Rare Disorders in partnership with Inspire.