“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….
“Giant Boxes for Giant Walks” – Faith, ACD Programs Coordinator
“Giant Boxes for Giant Walks” – Faith, ACD Programs Coordinator I wish I had taken a photo of the boxes…
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…
“The Power of Science and Connections – Thoughts on the 2022 Symposium” – Carlie
The Power of Science and Connections – Thoughts on the 2022 Symposium When I volunteered for the PaReNts project back…
“Walk for Strength 2022” – Kayla
Walk for Strength 2022 2022 Walk for Strength Guidance from a successful team captain- how to set up a team…
“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….
“Cerebral Creatine Deficiency Syndromes: The Road from Diagnosis to Therapies” – Erin
“Cerebral Creatine Deficiency Syndromes: The Road from Diagnosis to Therapies” – Erin I think most parents of children with Creatine…
“2020 Global Genes LIVE” – Faith
“2020 Global Genes LIVE” – Faith I recently joined the ACD as the new Programs Coordinator, and as part of…
“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…
“Share Your Rare” – Regina
“Share Your Rare” – Regina I had the recent pleasure of attending an event hosted by the Oklahoma Rare Action…