PATIENT STORIES OF HOPE AND INSPIRATION – ‘MEET ANNA!’
Fourteen and a half years ago, our lives were changed forever. Our one week old baby girl was diagnosed with a disease that we thought was created in a novelist’s imagination. We quickly learned that it was a very real, yet rare, disease that would nearly claim our daughter’s life. Our daughter Anna was born [...]
PATIENT STORIES OF HOPE AND INSPIRATION – ‘MEET NOAH!’
My son, Noah, now 15 years old, first started having health problems as an infant. First, he had asthma, then chronic pneumonia, and as he got older, lots of horrible leg pain that made him writhe on the floor in tears. It was awful! There were a few times we thought we might lose him [...]
ACTION ALERT: Costs of Caring for Children with Rare Disease Survey
Shivani B. Nazareth, RARE Blog contributor and a board-certified genetic counselor with Counsyl, Inc, is conducting an anonymous survey to better understand the financial cost of caring for a child with a rare genetic disease. By participating in this survey, you will contribute to a research paper that will quantify the financial burdens endured by parents of [...]
75 Days Until World Rare Disease Day!
It’s December 15th and that means only 75 days left until World Rare Disease Day on February 29th, 2012! The number 75 is significant for the rare community. According to the NIH’s Office of Rare Disease Research, 75% of RARE diseases affect children making this disease category one of the most deadly and debilitating for [...]
FINAL DAY TO ENTER TO WIN RARE DISEASE REGISTRY!
Today is the Final Day to Enter Videos to Win the RemedyMD Registry! This is it! You have until midnight tonight to submit your video just a few minutes in length, for your chance to win the R.A.R.E. Project and RemedyMD rare disease registry contest. The winner will receive a rare disease research software suite [...]
Emily's Hope: A Lesson for Us All
The WHOLE WIDE WORLD should know there is a girl in central Florida with a beautiful smile, and an even more beautiful soul whose name is Emily and who is in very, very poor health right now. To say she is fighting Vascular Ehlers-Danlos syndrome would be serious enough; but for Emily, vEDS is just [...]
R.A.R.E. Project's, Jonathan Jacoby to present at FDA Hearing on Rare Disease
On Tuesday, June 29, 2010, and Wednesday, June 30, 2010, FDA’s Office of Orphan Products Development will host a two-day public hearing and Webcast on the Development of Articles for Rare Diseases. This public hearing is intended to gain from health care providers, academia, industry, patients, and other interested persons their perspectives on various aspects [...]
Letting Go . . . a little bit
Standing shoulder to shoulder with hundreds of other parents this past Monday on what turned out to be an absolutely sticky afternoon, I waited with my son as the crowd behind us pressed in. Sixth grade students from all over our county had descended on a parking lot to embark on the week they’d been [...]
Desperate Measures
This is one of the posts from my blog, “Coming Unglued”, about life with Ehlers-Danlos Syndrome which is a rare connective tissue disorder in which the body’s ability to produce enough collagen is severely limited due to genetic mutations. In 1998, my first husband died from the Vascular form of EDS; two weeks later my son was [...]
Students Prepare for World Rare Disease Day with Blue Jeans Denim Ribbons.
Check out this article on students getting a jump on World Rare Disease Day — see news article here. Recommend on Facebook Share on Linkedin share via Reddit Share with Stumblers Tweet about it Subscribe to the comments on this post Print for later Bookmark in Browser Tell a friend