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 […]
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 […]
“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 […]
“Success Using Teletherapy” – Randi Most of the country has been on hold for a few months due to the COVID-19 virus. Even now, with the country reopening, our family […]
“Progress” – Lacy My son recently said my name for the first time. I don’t mean he called me Mommy. He says that about a hundred times a day, even […]
“Pilates” – Beth When it became clear that I would be caring for my son into his adult life, I knew that I had to make sure my body and […]
“Our Journey Into Medical Marijuana for Epilepsy” – Nancy The following is our journey into using Medical Marijuana (MMJ) with our son who has CTD, autism, and epilepsy. For those […]
“A Look into My Experiences at Rare New England” – Celeste If you’ve ever wondered how to get involved with advocacy at the ACD and what I’ve been learning from […]