Snezana Zunic, mother of Lena, lives in Novi Sad city is the representative for AHC International Alliance in Serbia
Her email address is:
First edition of The Soaring Times is out.
The latest edition of AHCF newsletter is out
Click HERE to read it.
Please take some time to explore what the AHC community on Rare connect has to offer
Interesting hypothesis from Sigurdur Johannesson from Iceland.
To read the article click HERE
2015 US FAMILY GATHERING WILL BE HELD IN BETHESTA CONFERENCE CENTER 27th August 2015
To register click HERE
This 4th edition of the Symposium on ATP1A3 in disease seeks to accomplish several key objectives:
To share the latest research findings in Alternating Hemiplegia of Childhood (AHC), Rapid Onset Dystonia-Parkinsonism (RDP), & CAPOS (Cerebellar ataxia — areflexia — pes cavus — optic atrophy — sensorineural hearing loss) Syndrome.
To discuss various symptomology and what has (or could) be done to address them to improve quality of life for patients NOW
To discuss what steps we need to take today to be ready for clinical trials when we find candidate compounds for treatment
To involve new research and clinical teams in the important work ongoing
We want to express our gratitude for the crucial and generous effort of the family support groups in the organization of this Symposium.
We look forward to seeing you in Washington, DC Metro this August!
Jeff Wuchich (Cure AHC), David Goldstein (Columbia University), Erin Heinzen (Columbia University), Mohamad Mikati (Duke University) Chairpersons
The Foundation is very pleased to announce that the 2016 AHCF Family Meeting will be held July 13th thru 17th in
The AHCF Family Meeting offers access to AHC clinicians, genetic counseling, presentations of current research, and opportunities to connect with AHC families. Help us make our 10th meeting as helpful, educational, and valuable as the previous nine and better! More details are developing with our volunteer planning committee, so look for more information in the near future! See you there!