Xeroderma pigmentosum
Resources
Useful links
- Spanish association of XP patients: https://xerodermapigmentosum.es/
- Associació de Familiars I Amics de Nens Oncològics de Catalunya (AFANOC): https://www.afanoc.org/es/
- Asociación española de Adolescentes y Adultos jóvenes con cáncer http://www.aaacancer.org/
- XP association Germany: http://www.xerodermapigmentosum.de/
- XP support group UK: http://xpsupportgroup.org.uk/
- Teddington Trust XP Community UK: http://www.teddingtontrust.com/
- XP association France: https://www.enfantsdelalune.org/
- Camp Sundown XP Society: https://www.xps.org/
- Youth Cancer Europe: https://www.youthcancereurope.org/
- Clinical trials: https://clinicaltrials.gov/ct2/results?cond=Xeroderma+Pigmentosum&term=&cntry=&state=&city=&dist=
Glossary
Understanding the technical and clinical meanings of the words present in this content is essential. In order to provide you with a reliable source of information about common terms used when talking about skin cancer, we strongly suggest you consult the Melanoma Research Foundation Glossary.
Abbreviations
ASCO: American society of clinical oncology
MRI: Magnetic resonance imaging
MRS: Magnetic resonance spectroscopy
PET: Positron emission tomography
RDs: Rare diseases
S4R: Share4Rare
XP: Xeroderma pigmentosum
Revision history
This material has been produced by different specialists including a dermatologist focused on XP of the Sant Joan de Déu children's hospital in Barcelona (Dra. Asunción Vicente), and has been reviewed by different empowered caregivers of XP patients: Xènia Aranda, mother of a child with XP, president of the Spanish XP association and Ferran Aranda, grandfather of a child with XP and treasurer of the Spanish XP association (Spain).