In collaboration with Simons Searchlight, we will have a joint family and research conference with 3 other patient organizations that present similarly to ours.
When?
Where?
Hyatt Regency Baltimore Inner Harbor
300 Light Street
Baltimore, MD 21202
Cost?
Attending families will be responsible for their travel and hotel costs (which will be negotiated at a reasonable rate by Simons Searchlight). However, we are currently speaking with a donor who may sponsor the hotel room costs for our families. Please stay tuned. Families will be expected to register for the conference by the designated date (Date to be determined shortly). Registration is not open yet. Good news, there will be NO registration fee for families.
Why?
The Simons Searchlight program is built on the belief that changes in the genes associated with autism and neurodevelopmental disorders cause both unique clinical features within each group but also many similar challenges. We are hopeful that scientific breakthroughs in one rare genetic condition can accelerate progress for other disorders. Bringing together multiple gene groups for this meeting will offer families the opportunity to connect with others sharing their same genetic finding, and also the chance to learn from other groups and participate in research projects looking across conditions. CSNK2A1 Foundation believes that collaboration across similar conditions and groups will accelerate research that will benefit us all.
We are excited to see you all!
If you have any questions, please contact us.
We are focused on finding a cure for Okur-Chung Neurodevelopmental Syndrome and ensuring affected individuals have the opportunities and supports necessary for happy and full lives. CSNK2A1 Foundation is operated and funded through a committed team of volunteers, advocates and researchers.
We are a 501(c)(3) non-profit organization. EIN #82-4220939.
© 2023 CSNK2A1 Foundation
1929 Van Ness Avenue
San Francisco, CA 94109
(415) 483-2488
The information provided is not intended to be a substitute for professional medical advice, diagnosis or treatment. Never disregard professional medical advice, or delay in seeking it, because of something you have read on this website. Read more...
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