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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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, […]
CCDS Day & Rare Disease Day
CCDS Day & Rare Disease Day In 2017 we celebrated our first Cerebral Creatine Deficiency Syndrome Awareness Day on February 1st. This is a fitting time of year to recognize the importance of these rare disorders, as the world-wide Rare Disease Day falls on February 28th. The month was filled with posts of support and […]
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
Walk For Strength
Saturday, June 10th Host a local walk, join an existing team, or make a donation of support! Here’s how: To host a local walk: Choose a Team Name, Walk Location, and Start Time. Locations may include neighborhoods, parks, hike and bike trails, school tracks, etc. Get Registered! Register Here Be sure to enter your Team Name […]
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 Awareness Day
CCDS Awareness Day Thursday, February 1, 2018 It's official! February 1st is "Cerebral Creatine Deficiency Syndrome Awareness Day." Help spread awareness of CCDS by celebrating this day in your community. We kicked off our first celebration of CCDS day in 2017 and are already working on plans to make 2018 even better! Some ideas for individuals […]