This story is about our son, Wyatt, who was diagnosed with Coats plus syndrome at the age of ten. The story starts with my pregnancy. At 26 weeks, during a normal pregnancy, I suddenly felt the baby stop moving. Fearing… Read More
This is my story of my own journey as a pyknodysostosis (PKND) patient. It began way back as any other PKNDs, but I started to experience the impact when I was five and broke my clavicle when I fell down… Read More
Washington, D.C., August 1, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has issued a call for video submissions on the patient advocacy experience. The videos will be the latest part of a year-long campaign marking… Read More
Danbury, Conn., February 28, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announced a year-long awareness campaign for rare disease.
Kicking off today—Rare Disease Day 2017—“Do… Read More
The diagnosis of primary myelofibrosis (MF), one of three main myeloproliferative neoplasms (MPNs), came as a huge surprise for Bill Erickson in May 2012. According to the MPN Research Foundation, patients with MF have scar tissue buildup in their bone marrow, which prevents normal blood cells from being produced. Since blood cell… Read More
