From the Editor…
The following is list of PRP patient and caregiver resources is destined for inclusion in the revision of the PRP Report maintained by the National Organization of Rare Disorders. It is currently being reviewed by members of the PRP community and will then be reviewed by an Editorial Advisory Board of dermatologists. The folks at NORD will perform the final copyediting.
NORD Member Organizations
EURORDIS — Rare Diseases Europe
Plateforme Maladies Rares
96 rue Didot
Paris, 75014 France
Website: http://www.eurordis.org
Email: eurordis@eurordis.org
Foundation for Ichthyosis & Related Skin Types (FIRST)
2616 N Broad Street
Colmar, PA 18915 (USA)
Phone: (215) 997-9400
Toll-free: (800) 545-3286
Email: info@firstskinfoundation.org
Website: http://www.firstskinfoundation.org
PRP Alliance, Inc.
1500 Commerce Drive
Plano, TX 75093-2640 USA
Phone: (214) 205-0574
Email: bill.mccue@prpalliance.com
Website: http://www.prpAlliance.org
Other Organizations
Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126, USA
Phone: (301) 251-4925
Toll-free: (888) 205-2311
Website: http://rarediseases.info.nih.gov/GARD/
PRP Community on RareConnect
Zürich, Switzerland; Barcelona, Spain
Website (PRP): www.rareconnect.org
Email: rareconnect@prpSurvivalGuide.org
PRP Facebook Support Group
Virginia Bach, VA, USA
Website (PRP): www.facebook.com
Email: facebooksg@prpSurvivalGuide.org
PRP Survival Guide
Plano, TX, USA
Email: editor@prpalliance.com
Website: http://www.prpSurvivalGuide.org
2017 NORD PRP Report Revision
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