About us
XLH Denmark (XLH, arvelig rakitis) 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 and also has a representative (ePAG) in ERN Bond.
If you have any questions or want to know more please send us an e-mail on kontakt@xlh.dk
President
Tenna Toft Sylvest
Tenna has XLH and co-founded the association in 2018. She is also a parent of a child with XLH.
Tenna serves as the association’s international representative and is currently Co-Chair of the international XLH Alliance.
Additionally, she represents the association in Rare Diseases Denmark (Sjældne Diagnoser) and ERN BOND.
Vice President, MAB
Signe Beck-Nielsen
Signe co-founded the association in 2018. She holds a PhD and is a Consultant at the Centre for Rare Diseases, Skejby, Aarhus University Hospital.
Signe also serves as the association’s Medical Advisory Board and is the main contributor to all content on XLH and HPP on the website.
Secretary
Claus Vever
Claus has been part of the board since the beginning. He has XLH and is the father of a daughter with XLH.
Claus represents the association in Rare Diseases Denmark (Sjældne Diagnoser).
Treasurer
Bettina Samson
Bettina has XLH and is the parent of two adult children with XLH.
Bettina represents the association in the international XLH Alliance.
Board Member
Stefan Højen Petersen
Stefan is a father to a daugther with XLH.
Alternate &
HPP representative
Rie Krabbe
Rie has HPP and participates in the board’s work on equal terms with the other members.
Rie is also the association’s representative for HPP-related matters.
Alternate
Martin Rygaard Knudsen
Diagnosed with XLH.
Our partners
XLH, arvelig rakitis
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