“Creating Capacity” – Janet
“Creating Capacity” – Janet When I was faced with the CTD diagnosis of my son, who is now 10, I…
“Drug Development- A Parent Perspective” – Erin
“Drug Development- A Parent Perspective” – Erin When the news came out about Lumos stopping the development of the drug…
“My AGAT Story” – Christina
“My AGAT Story” – Christina The Association for Creatine Deficiencies (ACD) recently interviewed Christina, a 17-year-old senior in high school,…
“Share Your Rare” – Regina
“Share Your Rare” – Regina I had the recent pleasure of attending an event hosted by the Oklahoma Rare Action…
“Jacob” – Lacy
“Jacob” – Lacy A phrase I hear quite often is, “I don’t know how you do it.” I don’t always…
“IRONMAN Lake Placid Recap” – Jerry
“IRONMAN Lake Placid Recap” – Jerry My fourth Ironman is in the books. Lake Placid, New York is a beautiful place…
“Atypical Adventures: An Introduction” – Nathan
“Atypical Adventures: An Introduction” – Nathan Hello again, friends! I know it has been a while since I have updated…
Coriell Biobanking Opportunity
Support Personalized and General CCDS Research Efforts by Donating Biosamples The Association for Creatine Deficiencies (ACD) is proud to partner…
“WE’RE IN THIS TOGETHER, Like It or Not” – Nancy
“WE’RE IN THIS TOGETHER, Like It or Not” – Nancy I know I’m one of the lucky ones. We still…
“Discussions from the Society for Inherited Metabolic Disorders (SIMD) Meeting” – Tony
“Discussions from the Society for Inherited Metabolic Disorders (SIMD) Meeting” – Tony The Society for Inherited Metabolic Disorders (SIMD) holds…