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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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June 2017

Walk For Strength

June 10, 2017

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 and share it with friends and family that plan to join your team. Get registered by May 15th. **Registrations received after May 15th will not…

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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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February 2018

CCDS Awareness Day

February 1, 2018
Ty and Paige wearing We are Rare t-shirts for CCDS 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 in their hometown include: Create a personalized campaign on our Crowdrise Page (Scroll down to the orange button "Create a Fundraiser", enter your CCDS story…

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Rare Disease Day

February 28, 2018

Rare Disease Day Wednesday, February 28, 2018 CCDS are considered rare disorders and the ACD is proud to support Rare Disease Day. Help us join with other rare disease groups in spreading Rare Disease and CCDS Awareness on February 28, 2018. Rare Disease Day is a worldwide initiative. For more information on this international event, visit For more information about Rare Disease Day in the US, click here. Shop and support ACD to get your CCDS Awareness merchandise today!…

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July 2018

Walk For Strength

July 1, 2018

Walk For Strength June 9, 2018 Registration is now open for the third annual Walk for Strength. This walk is meant to be participated in by all CCDS families in their local communities. Your group may be as small as 1 or as large as you can recruit! Email us for more ideas and flyers to distribute, etc. at [email protected]

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CCDS Scientific and Patient Symposium

CCDS Symposium 2018

July 26, 2018 @ 6:30 pm - July 29, 2018 @ 12:00 pm CDT
The Westin Austin Downtown, 310 E 5th St
Austin, TX 78701 United States
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April 2019

CCDS Workshop at SIMD

April 8, 2019 @ 1:30 pm - 5:30 pm PDT

For more information, and to register for this event, please visit

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