Executive Board

Katherine Behl
AHCFE President
European Association Affiliated with: Alternating Hemiplegia of Childhood (AHC UK)
 
 
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Bridget Vranckx
AHCFE Secterary
European Association Affiliated with: AHC Spain - AESHA (Asociación Española del Síndrome de la Hemiplejia Alternante)
 
Reasons for being a part of AHCFE: When my son was diagnosed at 8 months of age, I immediately got involved with AESHA to raise funds for research and to help make AHC more visible in the Spanish-speaking community. Over the years, I have been in touch with many AHC families around the world and I discovered there is a disconnect among families across Europe. I am excited to be part of AHCFE and want to help bring European AHC families together and give this region a much-needed voice.
 
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Sigurdur H. Johannesson
AHCFE Treasurer

European Association Affiliated with: AHC Association of Iceland Eurordis (Rare diseases in Europe)

Reasons for being a part of AHCFE: My daughter Sunna Valdis was born in 2006 and got a diagnosis at 13 months. In 2009 the family formed the AHC Association of Iceland and we have since been very involved in the rare disease community both locally and internationally. I produced the documentary Human Timebombs which is a documentary on AHC.

As one of the founders of the AHC Federation of Europe and the AHC International Alliance, I have made it my mission in life to raise awareness about AHC and find a solution to treat the disorder.

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Abhishek Behl
Communication & Social Media
European Association Affiliated with: Alternating Hemiplegia of Childhood (AHC UK)
 
Reasons for being a part of AHCFE: With such an extremely rare condition it's important we connect with any and everyone living in the continent. By me working on the website is a small-time I give to all the AHC Champions around the world. We are your voices and one day there will be a breakthrough.  
 
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Filippo Franchini
Committee Member
European Association Affiliated with: A.I.S.EA Onlus (Associazione Italiana Sindrome Emiplegia Alternante)
 
Reasons for being a part of AHCFE: I've been involved with AHC for almost 20 years during which I've been involved in setting up the Italian Biobank and Clinical Registry on AHC, spoken as a patients' advocate in several international events and acted as liaison in a number of research projects which A.I.S.EA has helped organizing and funding. I hope my commitment and expertise may help and benefit the international AHC community. In loving memory of my son Lorenzo and all other AHC Champions who passed away.
 
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Nienke Lentze
Committee Member
European Association Affiliated with: AHC Kids – AHC Association of The Netherlands
 
Reasons for being a part of AHCFE: My daughter Indy (born 2006) has AHC and epilepsy. Soon after her diagnosis, I came into contact with the AHC Association. The contact with other parents of AHC kids means a lot to me. I wanted to do more and commit myself to search for a treatment for this disease. That is why I became treasurer at the Dutch AHC Association in 2011. In 2021 I took on the role of chairman. In recent years I have had a lot of contact with AHC parents in other countries. I think it is important that all AHC Associations in Europe work closely together to make real progress towards a solution for AHC.
 
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Tom O´Brien
Committee Member
European Association Affiliated with: Alternating Hemiplegia of Childhood Ireland (AHCI)
 
 
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