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PVNH Support & Awareness TM is a nonprofit organization of international reach which collaborates with PVNH genetic leaders, specialists, researchers. We also have alliances with some of the most outstanding rare disease advocates worldwide.
http://pvnhsupport.com/about-3/pvnh/what-is-pvnh/
World PVNH Disorder Awareness Day is celebrated on August 7. It was created in 2012 by Ella’s Mom and founder of PVNH Support & Awareness, Yolaine Dupont, after Ella passed away from PVNH in 2009. The incidence of PVNH is unknown, and about 50% of occurences are genetically linked to …
https://rarediseases.info.nih.gov/organizations/854
PVNH Support & Awareness; PVNH Support & Awareness . PVNH Support & Awareness . 206-1082 West 8th Avenue Vancouver British Columbia, V6H 1C4 Canada ... PVNH Subcortical band heterotopia. Synonyms: Double cortex syndrome, Double cortex, DC Subependymal nodular heterotopia. X-linked periventricular heterotopia ...
https://www.facebook.com/PvnhSupportAwareness
PVNH Support & Awareness. 1.8K likes. PVNH Support & Awareness connects and educates patients and medical professionals to raise awareness about Periventricular Nodular Heterotopia/Gray Matter...Followers: 1.8K
https://www.facebook.com/PvnhSupportAwareness/posts
PVNH Support & Awareness. 1.8K likes. PVNH Support & Awareness is a nonprofit organization that connects and educates patients and medical professionals to raise awareness about Periventricular...
https://rarediseases.org/organizations/pvnh-support-awareness/
Support; Close; for Patient Organizations. Join Membership Network. ... The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically ...
https://twitter.com/PVNHsupport
The latest Tweets from PVNH Support (@PVNHsupport). International community for #PVNH education & support. Periventricular Nodular Heterotopia + heterotopia disorders, PVNH/FLNA caused interstitial lung disease. VancouverFollowers: 386
https://www.ncbi.nlm.nih.gov/books/NBK1213/
Oct 08, 2002 · FLNA-related periventricular nodular heterotopia (PVNH), a neuronal migration disorder, is characterized by the presence of uncalcified nodules of neurons ectopically situated along the surface of the lateral ventricles. Affected individuals are predominantly heterozygous females; males most often show early lethality.Cited by: 6
https://www.pvnh.com/services
Individual, Small Group and Large Group Activities. Daily Housekeeping and Laundry Services. Homemade meals. Beauty and Barber Shop Services
https://www.youtube.com/watch?v=ZXH_tOFp7cI
Mar 25, 2013 · On the eve of Purple Day, and just a few days before Ella's 4th angelversary, Yolaine talks about PVNH, why she created PVNH Support & Awareness, about Ella …
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