PATIENT STORIES OF HOPE AND INSPIRATION – ‘Meet Mabel’
‘MEET MABEL!’ Our daughter, Mabel, is 18 months old. Mabel has all the symptoms of a syndrome or disease yet everything we find in her blood work is so ‘rare’ that we are left without a solid answer. Our hope is that research can catch up with Mabel’s symptoms faster than they progress. Sadly, it [...]
The Foundation for Prader-Willi Research (FPWR) Wins $50,000 RemedyMD Rare Disease Research Registry Donated by the Children’s Rare Disease Network (CRDN)
Announcement Comes After a Summer of Entrants Submitting Video Clips Telling Their Unique Stories in Exchange for Chance to Win Leading Life Sciences Research Software DANA POINT, CA/SALT LAKE CITY, UT, Oct. 17 /MarketWire/ –- In the spirit of Rare Disease Day, the Children’s Rare Disease Network (CRDN) received a donation from RemedyMD® (www.remedymd.com) of [...]
RemedyMD and the Children’s Rare Disease Network to Announce Winner of $50,000 Rare Disease Registry via Webinar, October 12th
Rare Disease Organizations Anxiously Await Results of Summer-Long Online Video Contest Giving Away Leading Life Science Research Platform Earlier this year we received a donation from RemedyMD (www.remedymd.com) of its RegistryOnDemand™ product specifically created for rare disease research organizations. We in turn announced a plan to give this research registry tool away to one lucky [...]
WORLD RARE DISEASE DAY EFFORTS UNDERWAY – WEAR THAT YOU CARE!!!!
‘Wear That You Care’ is BACK!! Supporting rare disease worldwide! Last year, thousands of people around the globe joined the campaign in support of World Rare Disease Day, which takes place this upcoming February, 29, 2012 – a truly RARE Day!!! Organizations hosted Wear Jeans days in their businesses, Schools supported through education and awareness [...]
SAVE THE DATE: 3rd Annual Rare Disease Symposium February 2012
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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 [...]
WHEN DISASTER STRIKES – ARE YOUR HEALTH RECORDS SAFE AND AVAILABLE?
When disaster strikes, are your health records safe and immediately Available? Dr. Martin H. Orens As a board certified emergency room physician, I am passionate about helping parents see the importance of having an online medical file for their children. It’s hard enough keeping track of a child’s health records in normal circumstances. Have you [...]
RARE DISEASE REGISTRY Contest underway – Deadline for submissions, Sept 30th!
The Sept. 30th CRDN/RemedyMD Video Contest Deadline is Almost Here! This summer, the CRDN announced a video contest to give away one free research software suite donated by RemedyMD valued up to $50,000. The software can integrate existing research data from any source and collect new data, and run powerful queries for accelerating the discovery [...]
Counsyl Has Generously Donated Free Genetic Tests to Help Raise Awareness of SMA
August 28, 2011 By Bill Strong At the Gwendolyn Strong Foundation, we want as many people as possible to know that 1 in 40 people unknowingly carry a severe mutation in the SMA gene. Getting tested before pregnancy is one of the best ways to make sure that your child does not fall victim to a possibly [...]
Guest Blog Scientific American – Innovation in Medical Diagnositics Saves Lives
Innovation in Medical Diagnostics Saves Lives – a system that isn’t broken and doesn’t need fixing For over a century, the U.S. Food and Drug Administration (FDA) has done a laudable job of ensuring the safety and efficacy of healthcare for Americans. Recently announced potential policy changes, however, have a good chance of doing just [...]