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AHCFE Executive Board

Executive Board

Sigurdur H. Johannesson
AHCFE President / 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.

Ways to connect: 

Nienke Lentze
AHCFE Secterary
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.
Ways to connect: 
Abhishek Behl
Website & 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.  
Ways to connect:  
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.
Ways to connect:  
Bridget Vranckx
Committee Member
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.
Ways to connect:  
Mirjana Pavlicek
Committee Member