What is Loss?
What is Loss? By R.A.R.E. Team Guest Blogger: Vanessa Lemminger, M.A., IMF 68894 Marriage & Family Therapy Registered Intern Death. It’s one of the most taboo subjects. If you ever want to end a conversation, start talking about death. Death and the sadness that occurs afterward, are often met by friends and loved [...]
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 [...]
Are You a Blogger? Join our Blog Hop for RARE disease on January 30th!
We are calling all bloggers to join us in a RARE disease focused blog hop on Monday, January 30th which will be 30 days before World RARE Disease Day. What is a blog hop? A blog hop is when bloggers write about a common theme/topic on a specific date. The hosting blog (which will be [...]
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 [...]
Brad Paisley Lends Voice to New Song "Hard Life" to benefit A-T Children's Project
Brad Paisley sings new song written by Joe Kindregan, A-T patient BRAD PAISLEY LENDS VOICE TO NEW SONG “HARD LIFE” Written By Joe Kindregan To Benefit A-T Children’s Project NASHVILLE, Tenn. (Dec. 12, 2011) Brad Paisley has just recorded a new song, “Hard Life,” available for purchase here http://links.causes.com/s/cly6Me and on all digital music outlets. The song [...]
Your Invited! Regional Essential Health Benefits Sessions
The Affordable Care Act ensures Americans have access to quality, affordable health insurance. To achieve this goal, the law ensures plans offered in the new Affordable Insurance Exchanges offer a package of essential health benefits, which are to be defined by the Department of Health and Human Services (HHS). The statute directs the Secretary to [...]
Better Access to Patient Longitudinal Data Promises Greater Research Latitude
Patient longitudinal data which are collected over long periods of time reveal a more complete picture of many rare diseases than temporal data alone. Children suffering from rare diseases are more likely to visit multiple providers of care over long periods of time such as one or more pediatricians and various specialists. Plus, being so [...]
NeuroDetour: A Conversation with Melanie Miller #FlameHeART
The Flammable Heart Exhibition is coming up Aug 7-13 for National Health Center Week. This post is a brief but candid look at the world of complex illness, and how MarbleRoad is trying to find creative ways to help people in need.
GLOBAL GENES PROJECT ANNOUNCES “WEAR THAT YOU CARE™” DENIM AWARENESS CAMPAIGN FOR RARE DISEASE DAY 2011
Statistics Show 95% of Rare Diseases Have No FDA Approved Drug Treatments; Only 352 New Drugs Developed and Approved For Tens of Millions of People Since 1983 DANA POINT, Calif. – January 26, 2011 – Monday, February 28, 2011, is the 4th annual Rare Disease Day — a day when people worldwide will show their [...]
Families look to orphan drug development at University of Minnesota
Orphan diseases affect 25 million people in the United States. By Taylor Selcke, MN Daily.com For Michael Zimanske, years of holidays and birthdays spent in hospitals began after a routine kindergarten check-up. The doctor said he wasn’t growing like a normal 5-year-old, and full body X-rays revealed the abnormalities in his joints. It took two [...]