The FPIES Foundation joined as the National Organization forRare Diseases (NORD) andTexas Children’s Hospital hosted a Twitter Chat aimed at helping navigate emergency room visits with a Rare Disease. NORD started the chat with some statistics that show rare diseases aren’t that rare. They say 1 in 10 Americans are affected by some sort Read more…
Food Protein Induced Enterocolitis Syndrome (FPIES) is a recognized rare diagnosis – globally. From Rare Diseases Day, “A rare disease is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time, and rare in Europe when it affects fewer than 1 in 2000“. “Alone we are rare, Read more…
World Rare Diseases Day February 28, 2014 Rare Disease Day 2014 focuses on care and encourages everyone in the rare disease community to Join Together for Better Care. We are not alone. Here at The FPIES Foundation that is something we feel every parent and caretaker should realize. Not only are Read more…