About us

 

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

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 Olesen

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

 

Signe Beck-Nielsen

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

Board member

Hanne Rygaard Rafn

Diagnosed with XLH and on early retirement.

Treasurer

Bettina Samson

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

Secretary

Claus Vever

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

XLH, arvelig rakitis

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.