About us

 

XLH, Hereditary Rickets Patient Association is based in Denmark and was founded in February 2018.
The association helps to support those living with XLH 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

Treasurer

Hanne Rygaard Rafn

Diagnosed with XLH and on early retirement.

Board member

Martin Rygaard Knudsen

Diagnosed with XLH.

Secretary

Claus Vever

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

XLH Patientforeningen

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.