AHC Europe is led by an Executive Board of volunteers, comprising parents from eight different European countries. This board represents the strength, diversity and shared determination of the European AHC community. Each board member has personal experience of living with Alternating Hemiplegia of Childhood and is committed to supporting families, strengthening collaboration, advancing research and working towards better treatments and a cure.
Our Executive Board
Sigurdur H. Johannesson
President | Treasurer
Iceland
Sigurdur is a leading advocate within the international rare disease community and has played a key role in fostering European and global collaboration for AHC. He became involved after his daughter, Sunna Valdis, was diagnosed with AHC when she was 13 months old.
In 2009, he co-founded the AHC Association of Iceland, and also helped to establish both the AHC Federation of Europe and the AHC International Alliance. He produced the documentary Human Timebombs, which has helped to raise worldwide awareness of AHC.
Sigurdur’s international advocacy experience and long-standing commitment to uniting families, clinicians and researchers make him a huge asset to the board.
Nienke Lentze
Secretary | Family Support
The Netherlands / Belgium
Nienke’s daughter, Indy, who was born in 2006, lives with AHC and epilepsy. It was through her family’s experience of this that Nienke realised how important it is for parents facing similar challenges to connect with each other.
In 2011, she joined the Dutch AHC Association as Treasurer and became Chair in 2021. Over the years, she has built strong relationships with families across Europe.
Nienke brings strong organisational skills and a profound commitment to supporting families and building a connected European network to the board.
AHC Vereniging Nederland – België
Bridget Vranckx
Communication | Social Media | Family Support
Spain
Bridget became involved in the AHC community after her son was diagnosed with AHC at eight months of age. Along with her family, she joined AHC Spain to raise money for research and increase awareness in Spanish-speaking communities in Spain and Latin America. She has been president of AHC Spain since 2018.
Over the years, she has also worked to connect the international AHC community by organising awareness campaigns for AHC Day and Rare Disease Day. These campaigns have helped to bring families and organisations together around shared visibility and advocacy efforts.
On the board, Bridget contributes creativity, community-building energy and a multilingual outreach.
Asociación Española del Síndrome de la Hemiplejia Alternante de la Infancia
Mirjana Pavlicek
Research
France
Mirjana joined AHC France in 1996, shortly after her daughter was diagnosed with AHC at 10 months old. She has been actively involved in the rare disease community ever since, both nationally and internationally.
Alongside her advocacy work, Mirjana draws on her extensive professional experience in the healthcare and pharmaceutical sectors to provide valuable insights into research, patient needs and the wider treatment landscape.
Mirjana is a strong advocate for global cooperation and the importance of collective action in addressing rare conditions.
Association Française de l’Hémiplégie Alternante
Anton Katsarov
Website Management
Bulgaria
Anton is the father of a child with AHC and chairman of the AHC Bulgaria. Drawing on his family’s experience, he is well aware of the challenges that families face when living with this rare disorder, particularly when they are the only ones in their country living with it. Since establishing the association in 2019, he has been dedicated to raising awareness of AHC in Bulgaria and across Europe.
He believes that, by collaborating at a European level, we can accelerate research, improve the quality of life for our children and prevent AHC families from feeling isolated.
Anton brings digital expertise and website management skills to the board, as well as a strong desire to make information and connections more accessible to families.
Alternating Hemiplegia of Childhood Bulgaria
Remi Orhant
Research
France
Rémi’s eldest daughter, born in 2011, was diagnosed with AHC when she was eight months old. He joined the French association the following year and became a board member in 2015, serving as webmaster. In 2022, he became president of AHC France.
Throughout this process, Rémi recognised that progress for AHC could not be achieved at a national level alone, but rather through strong European and international cooperation. It was this conviction that led him to join AHC Europe in 2024.
Rémi brings leadership, research advocacy and a sense of urgency to the board, driving meaningful change for the AHC community.
Association Française de l’Hémiplégie Alternante
Alvaro Quintas
Communication | Social Media
Portugal
Álvaro is the father of a child who was diagnosed with AHC at just eight months old. His family’s journey has been one of resilience and adaptation, celebrating every step forward with hope, strength and love.
In 2025, Álvaro and his family founded AHC Portugal. He is now actively advocating for AHC families in Portugal, raising awareness and building support networks.
Álvaro believes in the power of a strong, united community to create a better future for all children living with AHC. He brings positivity, a sense of community spirit and communications expertise to the board.
Associaçâo Portuguesa de Hemiplegia Alternante de Infância
Filippo Franchini
Board Member
Italy
Filippo has been involved in the AHC community for over 20 years. During this time, he has contributed to the setting up of the Italian Biobank and Clinical Registry on AHC, represented patients at international events and supported numerous research initiatives.
He continues this work to this day in loving memory of his son, Lorenzo, and all the other AHC Champions who have passed away.
Filippo brings exceptional long-term experience, expertise in scientific collaboration and patient advocacy, as well as an unwavering commitment to progress.
Associazione Italiana Sindrome di Emiplegia Alternante
Abhishek Behl
Board Member
United Kingdom
Abhishek believes that with such a rare condition, every family and every voice matters. He strongly believes in the power of the community and he has contributed to the website and through technical support.
Alternating Hemiplegia of Childhood UK
Our Story: How AHC Europe began
AHC Federation of Europe (now AHC Europe) was founded on 28 February 2013 – on Rare Disease Day, and one year after the discovery of the ATP1A3 gene as the primary cause of Alternating Hemiplegia of Childhood (AHC). This scientific breakthrough marked a turning point for the AHC community and laid the foundation for stronger collaboration between families, clinicians and researchers.
AHC Europe was established by a committed group of parent representatives from across Europe. The first Board included Sigurdur “Siggi” Johannesson (Iceland), Tom O’Brien (Ireland), Filippo Franchini (Italy), Ana Kockhans (Germany), and Albert Vilamala (Spain). At its inception, AHC Europe brought together national associations from Iceland, Denmark, the United Kingdom, Germany, Poland, France, the Netherlands, Ireland, Spain and Italy.
Today, AHC Europe continues to grow. We are pleased to have Siggi Johannesson serving as President and Filippo Franchini continuing as a Board member, alongside representatives from five additional countries. We now unite 15 national AHC and ATP1A3 patient associations across Europe, forming a strong and collaborative European networ.