Attendance at National Organization for Rare Diseases (NORD)
Attendance at National Organization for Rare Diseases (NORD) Washington, DC October 17-18, 2016
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Exhibits & Workshops
Exhibit at the Child Neurology Society (CNS) Annual Meeting 2016
Exhibit at the Child Neurology Society (CNS) Annual Meeting 2016 Vancouver, BC October 26 – 29, 2016 The Child Neurology Society (CNS) 2016 meeting was an excellent opportunity to collaborate with industry, clinicians, and patient advocates. ACD’s attendees discussed the importance of continued education around neurodevelopmental disorders and we were honored with the opportunity to attend […]
CTD Workshop
CTD Workshop Paris, France December 5 - 6, 2016 The ACD was honored to attend the CTD workshop, organized by Dr. Aurore Curie, Dr. Vincent des Portes and representatives of DeficSience and Xtraordinaire. For two days, CTD held center stage. Discussions focused on the disease itself, importance of collecting natural history data, potential intervention therapies, […]
American College of Medical Genetics Conference 2017
American College of Medical Genetics Conference 2017 Phoenix, AZ March 22-24, 2017 The 2017 ACMG conference in Phoenix, Arizona was well attended by geneticists from all over the world as well as other allied health care members. The ACD was privileged to speak with hundreds of attendees that visited their booth, including Dr. Simona Bianconi […]
MedX- Stanford University Abstract Presentation: Benefitting the Rare Disease Community Through Collaboration
MedX- Stanford University Abstract Presentation: Benefitting the Rare Disease Community Through Collaboration, April 22-23, 2017
Rockin’ For A Cause
Rockin' For A Cause Dripping Springs, TX Saturday, September 30, 2017 ACD’s first ever benefit concert, "Rockin' for a Cause", was held in Austin, Texas at the Mercer Street Dance Hall. Live music was provided by Worn Out Souls and headliner Micky and the Motorcars. The event brought in over 200 people in support of […]
Children’s Neurology Society Meeting 2017
Children's Neurology Society Meeting 2017 Kansas City, MO October 4-6, 2017 At this meeting, we were able to speak to many children's neurologists about the need for early diagnosis of CCDS. We were also able to answer their questions thanks to information from a survey completed by CCDS families.
CCDS Workshop at SIMD
For more information, and to register for this event, please visit creatineinfo.org/simd.
Global Genes Virtual Summit
Global Genes was founded to empower patients, build communities, and drive forward momentum for rare diseases globally. ACD attends this summit every fall and we are excited to invite our families to join in this year on this virtual platform. This event is open to CCDS families interested in learning more about how we can […]
Newborn Screening Bootcamp- EveryLife Foundation
The EveryLife Foundation is dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy. In this spirit, EveryLife is hosting a weekly one hour "Newborn Screening Bootcamp" virtual event each Wednesday from September 30 - October 28. This is a great opportunity to learn more about the […]