Our Structure
The International XLH Alliance (IXLHA) consists of more than 27 member organisations. Each voting member organisaton is represented by one delegate.
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
The Board elects an Executive Committee (EC) of four people responsible for running the daily business of the IXLHA.
Chair
Oliver Gardiner
Oliver@xlhalliance.org
Co-Chair
Tenna Toft Sylvest
Tenna@xlhalliance.org
Secretary
Shannon Sharp
Shannon@xlhalliance.org
Treasurer
Anna Koltunowska
Anna@xlhalliance.org
Team Coordinators and their Team Members
The IXLHA is run entirely by volunteers. Some are formally appointed by the EC.
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.
Communications
Jana Bombosch
Jana@xlhalliance.org
Danielle (Canada)
Michael (Austria)
Vanessa (Brazil)
Farah (Chile)
Ainhoa (Spain)
Cheri (Israel)
Doris (Austria)
Merav (Israel)
Sally (UK)
Oliver (UK)
Scientific
Pol Harvengt
Pol@xlhalliance.org
Elizabeth (USA)
Inês (Portugal)
Manuela (Italy)
Tenna (Denmark)
Fundraising
Isaac Ohana
Isaac@xlhalliance.org
TBC
Events
Tenna Toft Sylvest
Tenna@xlhalliance.org
Sally (UK)
Anu (Finland)
Tia (Finland)
Sandy (Australia)
Prakalp (India)
Tenna (Denmark)