Reflections on the CCDS EL-PFDD
Reflections on the CCDS EL-PFDD By Celeste Graham, ACD Director of Education I had always thought of the Food and…
Embracing the puzzle of rare diseases: reflections on non-profit leadership and service
Embracing the puzzle of rare diseases: reflections on non-profit leadership and service Special Message to CCDS Community from Former ACD…
“Awareness” – Lacy
“Awareness” – Lacy I find myself thinking a lot about awareness. It has been a buzzword in our lives for…
Creatine Decoded: The power of patient registries and patient-led research initiatives – How CCDS Families and Caregivers Can Drive Research
Creatine Decoded: The power of patient registries and patient-led research initiatives How CCDS Families and Caregivers Can Drive ResearchCreatine Decoded:…
“My Worst Fears” – Chelsi
“My Worst Fears” – Chelsi Do you ever feel like all the work we do for our kiddos is not…
“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…
“New Rules for our School” – Randi
“New Rules for our School” – Randi We are very fortunate in our state to have scholarships for children who…
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…
“Creating a Meaningful Life in the Midst of COVID” – Nancy
“Creating a Meaningful Life in the Midst of COVID” – Nancy It’s 3 AM and I can’t sleep. Again. I…