Undiagnosed with Developmental Milestones, Parents of Noah, 6, Still Search for Answers


Our son, Noah, just turned six. He is a bright, happy boy who loves to swim, read books, and play on his iPad. He uses a walker, or a wheelchair, to move around – he is also a very fast crawler. Noah has an app, […]

Undiagnosed Children’s Support Group Meeting in California

Screen Shot 2014-06-18 at 9.45.36 AM

“I could not find a local support group for families with undiagnosed children,” said group leader, Caroline Cheung. “It is a lost feeling not knowing where we are going and what to expect or plan for. I have found it helpful in many ways by connecting with […]

Lizzy Undiagnosed: Looking for Answers


My name is Lori Sedlachek, mother to Lizzy who is 3 years and 4 months old. She is basically non-verbal. We had her social skills evaluated at 7 months, fine motor at 11 months and gross motor at 15 months. She is babbling more. Though […]

Groundbreaking Documentary on Undiagnosed Disease Seeks $150K in Crowdfunding to Change Future of Medicine

Screen Shot 2014-06-04 at 11.11.32 AM

Millions of people worldwide live everyday with perplexing, undiagnosed illnesses that remain a mystery to their doctors. For the first time ever, this issue is the subject of a feature-length documentary titled Undiagnosed: Medical Refugees. From the position of being an undiagnosed patient and clinician, […]

I Have a Monster Called RSD–But RSD Doesn’t Have Me!


In 2000, at the age of 13, I was diagnosed with a monster: RSD. Reflex sympathetic dystrophy (RSD) is characterized by a group of symptoms including pain (often “burning” type), tenderness, and swelling of an extremity associated with varying degrees of sweating, warmth and/or coolness, […]

The Unique Life of Mr.B: Searching for a Diagnosis


This is the ongoing journey of our youngest son, Braeden (Mr.B) who came into this world two months early on November 7, 2011 suffering from Hydrops and Supraventricular tachycardia. He spent his first seven and a half months at Alberta Children’s Hospital and continues to spend […]

“Especially Beautiful” Models Raise Awareness of Rare Disease


Special needs models will be the focal point of the 1st Annual ‘Especially Beautiful Fashion Show’ in Orange County. These models, all special needs children and teens, are joining their friends Cali, 15, and Ryann, 4, Spooner in raising visibility about World Rare Disease Day. […]