http://www.novanews.org Keeing you informed about Vascular Anomalies Fri, 27 Jan 2012 13:56:46 +0000 http://backend.userland.com/rss092 en NOVA is pleased to announce our 2012 Family Conference October 5-7, 2012 Cincinnati Children's Hospital, Cincinnati, OH Kingsgate Marriott Hotel, Cincinnati, OH The preliminary agenda is below- please note it is subject to change.   10/5 1:00 pm          Early Registration and Check-in 3-5:00 pm      Vascular Anomalies- A basic course (3:00-5:00 pm)- this session is open to everyone ... http://www.novanews.org/information-from-nova/2012-nova-family-conference.html We have had a lot of discussion on face-book concerning the genetic/inheritance of hemangioma.  It is the generally understood that infantile hemangioma is sporadic, that there is not an inheritance pattern.  However there has been some families where it has appeared that there was more of an incidence then the ... http://www.novanews.org/information-from-nova/genetics-of-hemangioma.html   Thank you to Paul and Shannon for the Brooklyn's Best Golf Outing that supported NOVA. The money is being used for the 2012 NOVA Family Conference.             http://www.novanews.org/events/brooklyns-best-ball-golf-tournament.html There are several new studies at the NIH for Vascular Anomalies.  These are open studies and they are recruiting currently.  NOVA is not directly affiliated or benefiting from any of these studies.  We provide this information as a resource only. 1.  Study to Demonstrate the Efficacy and Safety of Propranolol Oral ... http://www.novanews.org/uncategorized/update-on-research-studies.html There is a great new website with a collection of videos on hemangioma.    http://wn.com/Hemangiomas http://www.novanews.org/information-from-nova/new-video-collection-of-hemangioma.html Dear PHACE families, I hope this note finds everyone well! I am writing on behalf of the PHACE Registry with hope that you might consider enrolling your child. Registry data is proving to be an invaluable tool for PHACE research....we are about to begin a parent-inspired study to look at the ... http://www.novanews.org/uncategorized/phace-registry-a-message-from-dr-metry.html NOVA operates a public blog and message forums for purpose of  the exchange of information. The blog and forums can be viewed by all. The blog and forums are not intended to be used as a replacement for professional medical information and advice.  NOVA encourages all users to seek the ... http://www.novanews.org/uncategorized/blog-rules-and-use.html PHACEing the Future               This conference is sponsored by: Children’s Hospital of Wisconsin, Medical College of Wisconsin, the National Organization of Vascular Anomalies, and HIG (Hemangioma Investigator Group)   The Second PHACE family Conference was hosted in Milwaukee, Wisconsin September 17-18 and was preceded by a multi-center Research Symposium.  The conference was a ... http://www.novanews.org/events/phace-syndrome-the-families-the-physicians-and-the-facts.html When looking for a physician to manage and treat, hemangioma, vascular malformation, PWS, KT, PHACES, and other vascular anomalies, there are several key things to consider. Whether you choose a large medical center, university based center or a private practice physician the center should offer a comprehensive multidisciplinary approach to treatment. ... http://www.novanews.org/treatment/vascular-anomaly-treatment-centers.html Son Pham is in Boston today having his final surgery today: Olwyn writes:  I thought I should let you knwo that Son's final surgery will be on January 12th.  It will be a long one, but Son is prepared for it.  The best part is that he will leave the hospital at ... http://www.novanews.org/family-news-and-updates/son-pham.html