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 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.

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.

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