The IWSA currently supports more than 230 families in 45 countries. Each country has its own unique culture, medical and education systems, and ways that individuals with WAGR syndrome are cared for. To better serve and represent all families around the world, the IWSA created the volunteer role of IWSA Country Representative.
As the IWSA’s first-ever international Board Member, Linda van de Sande also serves as the European Representative. In this role, she continues to lead the IWSA’s international outreach activities and works with and supports IWSA Country Representatives in Europe. Linda lives in Belgium (also serves as the country’s representative) and works to promote awareness of WAGR syndrome in Europe.
In 2022, she attended and presented at WAGR Weekend in Atlanta, Georgia. With a team of amazing volunteers and generous donors, Linda and her partner Bjorn Leynen hosted the very successful 2023 WAGR Weekend in Belgium. Linda has lived in numerous countries, speaks several languages, and brings a unique perspective to supporting WAGR families.
Contact linda.vandesande@wagr.org
Linda and her son Dylan (WAGR) and partner Bjorn Leynen
Madoka Hasegawa is the President of Japan WAGR Syndrome Association (JWSA). The group began in Japan in 2012 with a gathering of just four families. In 2015, they formally reorganized as a patient and family support group. Since its inception, JWSA has partnered with the IWSA and continues to successfully share resources and information.
In 2015, Madoka attended WAGR Weekend in San Diego, California.
Madoka is mother to Iori and by profession is an anesthesiologist. She has participated in numerous meetings and conferences in Japan and continues to raise awareness of WAGR syndrome and other incurable genetic disorders. JWSA translates medical information to share with its membership and holds group meetings and activities for its families. JWSA recently had an exhibit booth at the annual meeting of the Japanese Society for Genetic Counseling in Tokyo.
Contact Madoka.hasegawa@wagr.org
Madoka and son Iori
Chantal and Jan are parents to two teenagers and Maelynn (WAGR) and have been active with the IWSA for many years, including representing the IWSA at numerous events and activities in the Netherlands. They attended an IWSA leadership meeting in the US in 2016, and participated in WAGR Weekend events in the UK and Belgium. Chantal has been welcoming new WAGR/IWSA families in Europe for several years and continues to provide support to families looking for information and connection. Jan has made presentations to medical professionals and they both joined other IWSA representatives for meetings at the Princes Maxima Centre in Utrecht, Netherlands.
Contact chantal.dupree@wagr.org
Chantal and Jan with daughter Maelynn (WAGR)
Andrea Daehl and Simen Andresen are parents to Selma (WAGR). They live in Norway and serve as their country’s IWSA representatives. Andrea is also a deputy member of Aniridi Norge, Norway’s association that is a member association of the European Federation of Aniridia organizations, Aniridia Europe.
Andrea shares that, “For us, the IWSA means everything. They have helped and supported us through tough times…we felt very alone in Norway. There was a lack of competence among healthcare personnel and we missed someone to lean on and someone to ask all our questions and share all our terrifying thoughts with. That's why it means alot to us to be a representative family. We are ready to welcome new WAGR families and support them whenever they need it!”
Andrea, Simen, and Selma, with Andrea’s parents, attend WAGR Weekend 2023 in Belgium and explained, “Together with the IWSA we can share experiences and help each other. Coming together and meeting other families in the same situation means more than you can ever imagine.”
Contact andrea.daehli@wagr.org and simen.andresen@wagr.org
Andrea and Simen with daughter Selma (WAGR)
The IWSA collaborates with Aniridia Russia (which includes WAGR syndrome patients and their families), and works closely with Galina Gening, PhD. Galina was instrumental in creating the Interregional Support Center for Patients with Aniridia and WAGR Syndrome in Moscow, and currently serves as President of the Center. In 2014 Galina joined Aniridia Europe as a member of its Board of Directors, and has served the organization as Vice President since 2022. She has also served as a representative of the Russian Federation in the COST Aniridia-NET since 2020.
Galina’s personal interest in aniridia and WAGR began in 2009 after her daughter was born with congenital aniridia. Her professional interests include studying the impact of aniridia and WAGR spectrum on the mental health of patients and their families. She is a dedicated supporter of the IWSA WAGR Syndrome Patient Registry and facilitated the enrollment of more than 25 russian-speaking patients.
Galina’s support and outreach expands to Russian-speaking families around the world.
Contact Galina at info@aniridia.ru or galina.gening@aniridia.eu
Galina Gening, PhD
Aaron and Michelle Colhoun are serving as United Kingdom IWSA Representatives. They are parents to Grace (WAGR) and son AJ. The Colhouns live in Littlehampton, England, and attended several WAGR Weekend events in the UK, as well as 2023 WAGR Weekend in Belgium. They also supported the virtual WAGR Weekends during COVID when there were no in-person events.
Aaron shared that, "Our desire is to be a source that welcomes, supports, engages and encourages families from across the UK, and to be committed to helping the IWSA in their amazing, life changing mission to promote awareness, stimulate research and support families touched by WAGR syndrome."
And Michelle added, "The support and advice our family received from the IWSA helped us get through one of the most challenging periods of our lives and we are forever grateful to them."
Contact michelle.colhoun@wagr.org or aaron.colhoun@wagr.org
Aaron and Michelle with AJ and Grace (WAGR)
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