The 3rd CNE International Cystinosis Conference in 2022 will be hosted by The Dutch-Flemish Cystinosis Group. The conference will be held in Leuven, Belgium from July 7th to 10th, 2022 with Professor Dr. Elena Levtchenko from the University of Leuvenas a Scientific Chair.
Cystinosis Network Europe (CNE) is an umbrella grouping of patient support, advocacy and research organisations in Europe and beyond. The group originally came together informally to provide peer support and to support the hosting of a family and research conference every two years in Europe. In the last two years the network has become more active and taken a leadership role in various contacts with researchers and members of the healthcare industry developing therapies and treatments for cystinosis. In 2019 the group decided to formalise and seek to establish itself as a registered charity.
The Dutch-Flemish Cystinosis Group was founded in 2000. Its main aim was to give patients and families the opportunity to meet and exchange information. About 40 patients and their parents are members of the group. The Dutch-Flemish Cystinosis Group is a member of VKS, a Dutch umbrella organisation for children and adults, diagnosed with metabolic diseases. Prof. Elena Levtchenko was involved in the Dutch-Flemish Cystinosis Group from an early stage to provide medical information to the patients and parents. The Dutch-Flemish Cystinosis Group has been a member of Cystinosis Network Europe since the start in 2015. Marjolein Bos and Fons Sondag are the current board members of the Dutch-Flemish Cystinosis Group.
This biennial conference in 2022 will bring together scientists, clinicians, families and adult patients. We expect an attendance of over 300 people from all over the world.
The Covid pandemic taught us that an online version of this event will be very important to allow access for those who are not able to travel due to health or financial reasons. We will stream and/or record the plenary presentations and provide them online including translation. Conference language will be English and we intend to provide translation to French, Italian, Spanish, German, Dutch,Turkish and Russian.
The conference will consist of a one-day high quality research meeting and parallel a paramedical meeting (for professionals only), a two-day family programme and one day with workshops for
patients and families. The family programme will include presentations from researchers and clinicians and the opportunity for engagement between
researchers, clinicians, patients and families. The workshops will provide time for patients and families with similar experiences to meet and connect.
This conference will provide separate social programs for adult patients and adolescent patients and siblings.
The organising committee,
Prof. Dr. Elena Levtchenko (KU Leuven), Marjolein Bos and Fons Sondag (CNE and Dutch-Flemish Cystinosis Group)