About us

XLH Denmark was founded in February 2018.
The association helps to support those living with XLH, HPP and related hereditary rickets disorders.

XLH Denmark is a founding member of the International XLH Alliance.

If you have any questions or want to know more please send us an e-mail on info@xlh-patientforeningen.dk.

 

President, Webmaster
& International representative

Tenna Toft Sylvest

Senior Consultant, diagnosed with XLH and a mother to a child with XLH.

Vice President, MAB

 

Signe Beck-Nielsen

Consultant at Center for Rare Diseases, Skejby at Aarhus University Hospital

Secretary

Claus Vever

Diagnosed with XLH and a father to a daughter with XLH.

Treasurer

Bettina Samson

Diagnosed with XLH and a mother to two children with XLH.

Board Member

Stefan Højen Petersen

Stefan is a father to a daugther with XLH.

Alternate

Martin Rygaard Knudsen

Diagnosed with XLH.

Alternate

Bettina Samson

Diagnosed with HPP.

XLH, arvelig rakitis

CVR: 39561778

E-mail: info@xlh-patientforeningen.dk

Tlf: (+45) 61 33 60 94

Medlem og støtte

Du kan støtte foreningen ved at blive medlem eller støttemedlem. Indmeldelse foretages her på patientforeningens hjemmeside.

Tilmeld nyhedsbrev

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Når du klikker tilmeld giver du samtykke til, at patientforeningen opbevarer dit navn og
e-mailadresse og må sende dig nyhedsbreve pr. e-mail. Du kan til enhver tid afmelde dig nyhedsbrevet ved at kontakte patientforeningen.