202 top medical experts on Phacomatosis pigmentovascularis across 24 countries and 8 U.S. states, including 33 MDs (Physicians). This is based on an objective analysis of their Scientific Publications, Clinical Trials, Medicare, and NIH Grants.
- Phacomatosis pigmentovascularis: A rare skin disease characterized by the co-occurrence of a widespread vascular nevus (typically nevus flammeus) and a pigmentary nevus, potentially associated with a variety of other cutaneous nevi, and with or without extracutaneous (most commonly central nervous system, ocular, or musculoskeletal) involvement. Several subtypes are distinguished based on phenotypic characteristics.
- Clinical guidelines are the recommended starting point to understand initial steps and current protocols in any disease or procedure:
- Support Organizations
- Children's Glaucoma Foundation
2 Longfellow Place
Suite 201
Boston, MA 02114
Telephone: 617-227-3011
Website: http://www.childrensglaucomafoundation.org
- Glaucoma Research Foundation
251 Post Street, Suite 600
San Francisco, CA 94108
Toll-free: 800-826-6693
Telephone: 415-986-3162
Fax: 415-986-3763
E-mail: question@glaucoma.org
Website: http://www.glaucoma.org
- Nevus Outreach, Inc.
600 SE Delaware Ave., Suite 200
Bartlesville, OK 74003
Telephone: +1-918-331-0595
E-mail: https://www.nevus.org/contact-nevus-outreach
Website: https://www.nevus.org
- Vascular Birthmarks Foundation (VBF)
PO Box 106
Latham
NY 12110
Telephone: (877) VBF-4646
E-mail: vbfpresident@gmail.com
Website: http://birthmark.org/
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Organizations Providing General Support
- National Organization of Vascular Anomalies (NOVA)
PO Box 38216
Greensboro, NC 27438-8216
E-mail: hall.karla.nova@gmail.com
Website: http://www.novanews.org
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