Our Structure
The delegates form the board of the IXLHA. The Board will aim to come together once a year at our Annual General Meeting (AGM). All delegates can participate at the AGM, but only delegates from Voting Member Organisations have a vote.
The Executive Committee
![Oliver Gardiner](https://xlhalliance.org/wp-content/uploads/2020/08/Oliver-Gardiner-150x150.jpg)
Chair
Oliver Gardiner
Oliver@xlhalliance.org
![](https://xlhalliance.org/wp-content/uploads/2020/08/Tenna-Toft-Sylvest-150x150.jpg)
Co-Chair
Tenna Toft Sylvest
Tenna@xlhalliance.org
![](https://xlhalliance.org/wp-content/uploads/2022/10/shannon-1-150x150.jpg)
Secretary
Shannon Sharp
Shannon@xlhalliance.org
![](https://xlhalliance.org/wp-content/uploads/2020/08/blank-150x150.png)
Treasurer
Anna Koltunowska
Anna@xlhalliance.org
Team Coordinators and their Team Members
Other volunteers are helping out on different projects, activities and ad hoc tasks. We have contacts all over the world, including XLH-groups, professionals and partners in the rare disease community.
![](https://xlhalliance.org/wp-content/uploads/2022/10/jana-150x150.jpg)
Communications
Jana Bombosch
Jana@xlhalliance.org
Vanessa Giovana
Ainhoa Bisonó-Fernández
Cheri Ohana
Doris Prochaska
Michael Prochaska
Merav Getenew Shina
Sally Hatton
Danielle Steenbergen
Farah Torres Bustos
![](https://xlhalliance.org/wp-content/uploads/2020/08/Pol-Harvengt-150x150.jpg)
Scientific
Pol Harvengt
Pol@xlhalliance.org
Elizabeth Olear
Manuela Vaccarrotto
Inês Alves
![](https://xlhalliance.org/wp-content/uploads/2020/08/blank-150x150.png)
Fundraising
Isaac Ohana
Isaac@xlhalliance.org
Inês Alves
Anna Koltunowska
Hristo Hristov
![](https://xlhalliance.org/wp-content/uploads/2020/08/Tenna-Toft-Sylvest-150x150.jpg)
Events
Tenna Toft Sylvest
Tenna@xlhalliance.org
Sally Hatton
Anu Haverinen
Tia Haverinen
Sandy Bevc
Shannon Sharp
Shari Van Vugt
Prakalp Sudhakar