PATIENT STORIES OF HOPE AND INSPIRATION – ‘Meet Peyton!’
Peyton isn’t that much different than any other four year old if you ask her. She loves to color and dance and she is a ‘Yo Gabba Gabba’ fanatic. Luckily, she is still blissfully unaware of the stares directed her way when we go to the grocery store or the playground. Peyton was born with [...]
Blog Hop for Rare Disease – Please Read, Share and Raise Awareness!
There are less than 30 days to World Rare Disease Day on February 29. We kick off our campaign this year as host of a Rare Disease Blog Hop. Over 40 bloggers united to blog today to raise awareness about this important day and on ways that you can get involved. The statistics around rare [...]
GUEST BLOG: A special collaboration among the RARE Project, Grand Rounds, and The Afternoon Nap Society
Guest Blog by Sarah E. Kucharski of the Afternoon Nap Society A special collaboration among the RARE Project, Grand Rounds, and The Afternoon Nap Society will use social media to connect patients and healthcare providers while raising awareness of World Rare Disease Day (coming up on February 29). As a rare disease patient and healthcare [...]
ACTION ALERT – World RARE Disease Day at National Institute of Health
Rare Disease Day at NIH (RDD@NIH) On February 29, 2012, the National Institutes of Health (NIH) will celebrate the fifth annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by the NIH Office of Rare Diseases Research, the NIH Clinical Center, other NIH Institutes and Centers; [...]
In A Parents Words – Why RARE Disease Needs ULTRA!
Roy and Reed Zeighami, couldn’t have articulated it better – why the RARE Disease Community needs the ULTRA Act of 2012. Please join Roy in viewing his two minute video! And. . . if you feel so compelled, take action!!! ULTRA Act of 2012 – need your support Over 90 organizations have signed on to [...]
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 [...]
The Myelin Repair Foundation Aims to Eliminate the Valley of Death
What a great video. Watch to learn why $139 billion dollars invested into medical research only leads to 21 FDA approved drugs. The Myelin Repair Foundation is one of many organizations/RARE advocates working to change this. To learn more about the Myelin Repair Foundation, click here. Recommend on Facebook Share on Linkedin share via Reddit [...]
Wall Street Journal Reports – Do It Yourself Drug Development, With Some Help!
The effort by two families to buy and develop a drug that holds promise in treating Duchenne muscular dystrophy — described today in the WSJ — is the result of an innovative new model set up to support the burgeoning phenomenon of do-it-yourself drug development. Before the Seckler and Wicka families bought halofuginone, a drug that [...]
NEW STUDY RELEASED – Living with Chronic Illness
A Prescription for Advocacy – the results may surprise you! From March 2008 to March 2009, Advocacy for Patients with Chronic Illness and the University of Michigan Center for Managing Chronic Disease conducted a survey of more than 1500 people with chronic illnesses. The goal of the survey was to identify the obstacles facing people [...]