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September 2016

Exhibit at the Society for Developmental and Behavioral Pediatrics (SDBP)

September 17, 2016 - September 19, 2016

Exhibit at the Society for Developmental and Behavioral Pediatrics (SDBP) Savannah, Georgia September 17 – 19, 2016 Tony Parker and Melissa Parker

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Attendance at Global Genes Rare Patient Advocacy Summit

September 22, 2016 - September 24, 2016

Attendance at Global Genes Rare Patient Advocacy Summit Huntington Beach, CA September 22 – 24, 2016 Global Genes is the leading rare disease advocacy organization with global reach to the worldwide community of rare disease patients, caregivers, advocates, and clinical partners. This conference was the 3rd year that the ACD had attended in Huntington Beach, CA.  Each year the ACD has had the privilege of listening to some of the most well respected medical professionals in the country.   This year…

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October 2016

Attendance at National Organization for Rare Diseases (NORD)

October 17, 2016 - October 18, 2016

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

October 26, 2016 - October 29, 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 the Child Neurology Foundation’s CAB meeting, comprised of a diverse group of innovators interested in changing the future of medicine. The voice of the patient…

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December 2016

CTD Workshop

December 5, 2016 - December 6, 2016

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, and the need for clinical trials. The call for a CTD treatment is getting louder. With data provided by our patient community, we were able…

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March 2017

American College of Medical Genetics Conference 2017

March 22, 2017 - March 24, 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 from the NIH. Dr. Bianconi has a current publication in the Rare Neurological Disease Special Report on Creatine Transporter Deficiency Disorder. The publication can be…

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April 2017

MedX- Stanford University Abstract Presentation: Benefitting the Rare Disease Community Through Collaboration

April 22, 2017 - April 23, 2017

MedX- Stanford University Abstract Presentation: Benefitting the Rare Disease Community Through Collaboration, April 22-23, 2017

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September 2017

Rockin’ For A Cause

September 30, 2017

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 CCDS and raised over $52,000! All proceeds from Rockin’ for a Cause go directly toward supporting programs for research, education, newborn screening advocacy efforts, and…

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October 2017

Children’s Neurology Society Meeting 2017

October 4, 2017 - October 6, 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.

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April 2019

CCDS Workshop at SIMD

April 8 @ 1:30 pm - 5:30 pm PDT

For more information, and to register for this event, please visit creatineinfo.org/simd.

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