Our Structure

The Board

The International XLH Alliance (IXLHA) consists of more than 15 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.
Oliver Gardiner

Chair
Oliver Gardiner

Oliver@xlhalliane.org


Co-Chair
Tenna Toft Sylvest

Tenna@xlhalliance.org

Sunindiya Bhalla

Secretary
Sunindiya Bhalla

Sunindiya@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.

Michael Prochaska

Communications
Michael Prochaska

Michael@xlhalliance.org

Ainhoa Bisonó-Fernández
Cheri Ohana
Doris Prochaska
Jana Bombosch
Merav Getenew Shina
Sally Hatton


Scientific
Pol Harvengt

Pol@xlhalliance.org

Elizabeth Olear
Manuela Vaccarrotto
Inês Alves

Sunindiya Bhalla

Fundraising
Sunindiya Bhalla

Sunindiya@xlhalliance.org

Inês Alves
Anna Koltunowska
Hristo Hristov


Events
Tenna Toft Sylvest

Tenna@xlhalliance.org

Sally Hatton
Frida Oskarsson
Anu Haverinen
Tia Haverinen
Sandy Bevc

share on