“Notes from the 2023 Virtual Conference” —Kim
Notes from the 2023 Virtual Conference, General Sessions –Kim In 2022, I visited a full CCDS symposium for the first time….
“How Gio’s Diagnosis Affected Us” -Sylvia
“How Gio’s Diagnosis Affected Us” –Sylvia In 2019 I was planning to have a hysterectomy due to my endometriosis, but…
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: ACD-Funded CTD Drug Repurposing Fellowships Make Progress in Year One
Creatine Decoded: ACD-Funded CTD Drug Repurposing Fellowships Make Progress in Year One Patient Samples from Coriell Biobank in Studies Seeking…
“A Diagnosis is a Chance at Hope” – Carlie
“A Diagnosis is a Chance at Hope” – Carlie By way of background, I am new to the CCDS community….
“Our Life with Epilepsy” – Nathan
“Our Life with Epilepsy” – Nathan Hello again, CCDS family, sorry it has been a while since I have contributed…
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…