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
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.