Raredr

Advocacy

Dave Esposito, father of a child with Sanfilippo syndrome, wants the FDA and the pharmaceutical industry to know that their definition of a good outcome measure is different than a parent's definition.
Dave Esposito is the father of a daughter diagnosed with Sanfilippo syndrome, a rare lysosomal disorder that currently has no treatment or cure.
Key questions asked among men, women, and children with a diagnosis of Syringomyelia are the following: “What physical therapy exercises are recommended for Syringomyelia?”, and “Should physical therapy be a part of my recommended treatment?”
A recap of RDR's adventure to Disneyland to raise awareness and funds for rare diseases.
Beginning in Antarctica and ending in Australia, BethAnn ran over 153 miles in under 35 hours during those 7 days. What makes this special, is that BethAnn is a cancer survivor.
The Jett Giving Fund helps families in raising the money necessary to get the equipment they need that is usually not covered by medical insurance.
This week, 47-year-old BethAnn Telford is running 7 marathons on 7 continents in 7 days.
Logan is a 21-year-old with a progressive neurodegenerative disease who likes adventures. The team at Adaptive Adventures use specially adapted sleds, and a bit of muscle, to guide Logan through the forest.
This week, 47-year-old BethAnn Telford is running 7 marathons on 7 continents in 7 days.
The Alport Syndrome Foundation (ASF), the Pedersen Family and the Kidney Foundation of Canada (KFOC) have announced funds are availalbe for researchers hoping to advance our understanding of Alport syndrome.
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