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jobby  
#1 Posted : Tuesday, October 25, 2016 8:26:54 AM(UTC)
jobby


Rank: Member

Groups: Registered, SCN8A Patient/Caregiver
Joined: 10/25/2016(UTC)
Posts: 3
Italy
Location: Firenze

Good aften, i'm Diego Costa, i'm father of Giulia, nice to meet all.

I am here to share our experiences and to know the way of life of children who have the same genetic variation of my daughter.

thank you all

Diego
acencina  
#2 Posted : Monday, October 31, 2016 12:45:30 PM(UTC)
acencina


Rank: Member

Groups: Registered, Administrators, SCN8A Patient/Caregiver
Joined: 2/2/2016(UTC)
Posts: 15
Woman
United States
Location: Tucson, AZ

Hello Diego,

Thank you for your post introduction! If there is anything I can do to help let me know!

Also, if you have a moment please take our survey, the results of which will be presented at the 2nd annual SCN8A Roundtable in Houston this year.

Best,
Alixx Encinas
Ph.D. Student
Hammer Labs
Alixx Encinas
Ph.D. Student
Hammer Labs
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The information provided in this forum is for informational purposes only. The purpose of these topics is to promote a broad understanding and knowledge of SCN8A in an effort to support parents and guardians in the care of patients with this rare genetic disorder. It is not intended to be a substitute for published data, clinical practice guidelines, professional medical expertise, diagnosis, or treatment. The information may be useful when corresponding published data are not available. Always seek the guidance of physicians with any questions you may have regarding treatment and before beginning a new health care regimen. Never disregard professional medical advice or change treatment course solely because of something you have read within this forum. The user assumes all responsibility and risk for the use of the information provided in this forum. Under no circumstances shall The SCN8A Community Website, the University of Arizona, its volunteers, sponsors, or any contributors to this forum be liable for any DIRECT, INDIRECT, INCIDENTAL, or CONSEQUENTIAL damages that result from the use of the forum.