“The Rare Sibling Experience: NORD Webinar” – Erin
“The Rare Sibling Experience: NORD Webinar” – Erin The National Organization for Rare Disorders (NORD) recently hosted a webinar on…
“Coping With the Fear” – Nancy
“Coping With the Fear” – Nancy I had just poured myself a cup of coffee and settled in for the…
Creatine Decoded: CCDS Gene Therapy Research
Creatine Decoded: CCDS Gene Therapy Research This essay was written by Laura Trutoiu, ACD Director of Research, with support from…
Creatine Decoded: Featured Scientist, Dr. Jonathan Schlebach PhD
Creatine Decoded: Featured Scientist, Dr. Jonathan Schlebach PhD This essay was written by Celeste Graham, ACD Director of Education, with…
“Are You a 21st Century Pioneer?” – Nancy
“Are You a 21st Century Pioneer?” – Nancy Pioneer. Verb. A person who is among the first to develop or…
Creatine Decoded: Behavior Support and the First ACD Webinar for Parents
Creatine Decoded: Behavior Support and the First ACD Webinar for Parents This essay was written by Celeste Graham, ACD Director…
“CLOSED.” – Nancy
“CLOSED.” – Nancy “School closed,” says Sam for the 14th time today. I take a deep breath. If I don’t…
Creatine Decoded: Pharmacochaperoning & CTD Research Participation
Creatine Decoded: Pharmacochaperoning & CTD Research Participation This essay was written by Erin Coller with the support of Laura Trutoiu,…
“A Look into My Experiences at Rare New England” – Celeste
“A Look into My Experiences at Rare New England” – Celeste If you’ve ever wondered how to get involved with…
“Creating Capacity” – Janet
“Creating Capacity” – Janet When I was faced with the CTD diagnosis of my son, who is now 10, I…