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 [...]
PATIENT STORIES OF HOPE AND INSPIRATION
‘MEET NICO AND HIS FAMILY!’ Our eight-year-old Nico could likely give a pretty extensive tour of the Hospital for Sick Children (SickKids), his home away from home. He could show off all the places he spends his time at: the neurosurgery clinic; ophthalmology clinic; ears, nose and throat clinic; dermatology; cardiology; growth hormone program [...]
Kylie McPeak – Living Life with an Undiagnosed Rare Disease
Our daughter Kylie was perfectly healthy until three days before her 4th birthday – April 2008. She had a sudden seizure. From that moment on our lives changed drastically. After her first seizure, she developed a strange twitch by her mouth which then turned into a “tremor.” Over a matter of months, the tremor spread from her [...]
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 [...]
Legislation Introduced to Create Undiagnosed Diseases Research and Collaboration Network
Legislation Introduced to Create Undiagnosed Diseases Research and Collaboration Network Sept 1, 2011, by Heather Long My son, Cal was five years old when he lost his life to an undiagnosed disease. He spent the majority of his short life in and out of hospitals, being seen by numerous specialists and subjected to countless diagnostic [...]
Toy Request Application
The Dare To Hope Foundation distributes toys to help brighten the day of children with rare, complex, critical, chronic and undiagnosed medical conditions during treatment, hospitalization, diagnosis and difficult times, as well as for fragile children who are home-bound or hospice-bound. Toys may also be distributed to families of children with complex medical conditions who require assistance [...]
Primary Care and HIT – What do they mean for you?
Howard Liebers of MarbleRoad asks questions about how efforts in both primary care and health information technology may impact families with rare disorders.
Make Your Voice Heard
Howard is collecting your stories, comments, recommendations, etc. for the FDA’s hearing on rare disease in June 2010. Howard will also be representing MarbleRoad at the NORD Partners in Progress 2010 Gala in Washington DC on May 18, 2010.
Quality of Life and the CLASS Act
Howard Liebers of MarbleRoad talks about the CLASS Act within Federal health reform legislation and other efforts to help families impacted by a rare disease diagnosis achieve a better quality of life.