Charities Unite Worldwide to Fund Research into Reversibility of Brain Damage Caused By Sanfilippo Syndrome
Charities Unite Worldwide to Fund Research into Reversibility of Brain Damage Caused By Sanfilippo Syndrome (RARE Project – Dana Point, CA) Rare Disease affects 350 million people worldwide, consisting of 7,000+ identified diseases and disorders. Currently less than 5% of all rare diseases have any type of therapy or treatment, and much of the early [...]
A RARE REFLECTION ~ 2011
A RARE Reflection As this year comes to a close I felt compelled to take just a few minutes to share my thoughts, hopes and wishes for this upcoming year. But equally important, to reflect on this past year’s journey and how we have come to be where we are at today. There is much [...]
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 [...]
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 [...]
'THE HILL' Reports: Help children with rare diseases get the new medicines they need
Having a seriously ill child is always difficult and painful. It’s even more so when a child’s illness is one of the 7,000 rare diseases for which cures and treatments are hard to find. Rare diseases affect more than 15 million children in the United States. A disease is considered rare if it affects less [...]
Nature.com Reports – Rare-Disease Studies Seek Online Giving
Website invites micro-donations for unusual illnesses ~ Amber Dance The Global Genes Fund seeks online donations for conditions such as progeria, a rare disorder that causes accelerated aging. Those wanting to raise awareness about a rare disease will be able to take advantage of an initiative being launched later this year: a website that connects [...]
Genetic Diseases In Children (GDC) Conference – A Grand Slam!
The Wadsworth Center, March 7-10, NYC at, was host to the Genetic Diseases In Children Conference. My recommendation . . . make it to the meeting next year! Here’s why! Most conferences discuss theories, postulate and talk a lot about ‘what can and should be done’ about a topic. The GDC Conference created an agenda [...]
RemedyMD and the Children’s Rare Disease Network Announce Plan to Give Away Free Rare Disease Research Registry Valued up to $50,000 via Contest
Millions of Children in America Suffer From Roughly 7,000 Unique Rare Diseases, Most of Which Lack Adequate Research Tools and Funding DANA POINT, Calif. & SALT LAKE CITY–(BUSINESS WIRE)–In the spirit of Rare Disease Day on Feb. 28th, the Children’s Rare Disease Network (www.crdnetwork.org) has received a donation from RemedyMD® (www.remedymd.com) of its RegistryOnDemand™ product [...]
A New Year's Wish – from RARE
The holidays are over, the decorations come down, the resolutions that we have committed ourselves to have begun; the diets, saving money, taking more time out for the family, laughing more, going to church, making time for friends, hitting the gym, working less but working smarter, the list goes on. Sometimes just trying to prioritize [...]
Patients 2.0, the growing demographic of networked patients
In a ballroom at the Hilton Union Square in San Francisco on October 6, 2010, several hundred people shared ideas, debated, and painted a multi-faceted picture of the NewPatient: the networked patient. The meeting was convened, in “unconference” style, in conjunction between the Health 2.0 Conference and Gilles Frydman, founding father of ACOR, the Association [...]