Reflections on the CCDS EL-PFDD By Celeste Graham, ACD Director of Education I had always thought of the Food and Drug Administration (FDA) as a very high-level governmental agency that […]
Embracing the puzzle of rare diseases: reflections on non-profit leadership and service Special Message to CCDS Community from Former ACD Board Chair Laura Trutoiu When Rohan was diagnosed with Creatine […]
“Awareness” – Lacy I find myself thinking a lot about awareness. It has been a buzzword in our lives for the past five years since we found out that Jacob […]
Creatine Decoded: ACD-Funded CTD Drug Repurposing Fellowships Make Progress in Year One Patient Samples from Coriell Biobank in Studies Seeking to Understand CTD Mutations & Explore Existing FDA-Approved Drugs as […]
“A Diagnosis is a Chance at Hope” – Carlie By way of background, I am new to the CCDS community. Our 8-year-old son was diagnosed with CTD on 1 April […]
“Our Life with Epilepsy” – Nathan Hello again, CCDS family, sorry it has been a while since I have contributed to the blog, but I am thankful to have the […]
Creatine Decoded: The power of patient registries and patient-led research initiatives How CCDS Families and Caregivers Can Drive ResearchCreatine Decoded: The power of patient registries and patient-led research initiatives – […]
“My Worst Fears” – Chelsi Do you ever feel like all the work we do for our kiddos is not enough? How about feeling lost and deep deep pain when […]
“The Rare Sibling Experience: NORD Webinar” – Erin The National Organization for Rare Disorders (NORD) recently hosted a webinar on the “Rare Sibling Experience.” As the mother of two children, […]
“Coping With the Fear” – Nancy I had just poured myself a cup of coffee and settled in for the 2-hour Ultragenyx Study, feeling I might have something to offer […]