VOGM Resources
Frequently Used Second Opinions
Top VOGM Specialists in the US:
Dr. johanna Fifi/Dr Tomoyoshi Shigematsu/Dr. Dr Alex Berenstein
Mount Sinai NYC
212-241-3400
michelle.sorscher@mountsinai.org
Michelle Sorscher, Clinical Coordinator (contact Michelle directly & cc whole team for second opinion)
scheduling coordinator
Daniensy Morel
Jessica Bonet PA
Dr Johanna Fifi
Dr Tomo Shigematsu
tomoyoshi.shigematsu@mountsinai.org
Please send imaging to:
Dr. Johanna Fifi, Dr Tomoyoshi Shigematsu, MD and Michelle Sorscher, CPNP
Cerebrovascular Center, Pediatric Cerebrovascular Program
1450 Madison Avenue, Box 1136
KCC 1-North
New York, NY 10029
Dr. Darren Orbach
Boston Children’s Hospital
Scheduling coordinator
(please contact office directly for free second opinion)
617-919-1379
cvdsurgery@childrens.harvard.edu
Connor Henry connor.henry@childrens.harvard.edu
Dr Darren Orbach Darren.orbach@childrens.Harvard.edu
Nurse Practitioners:
Jen Judge Jennifer.judge@childrens.Harvard.edu
christopher Isibor
Christopher.isibor@childrens.Harvard.edu
For inutero diagnosis include Kassie and Laurie in emails:
kassie.merrill@childrens.Harvard.edu
laurie.OliverTaylor@childrens.harvard.edu
Please send imaging to:
Department of neurosurgery
Attn: Darren Orbach
Hunnewell 230
300 Longwood Ave
Boston, MA 02115
Europe:
Germany:
Dr M Schlutz-Hendann
martin.schlutz-hendann@sana.de
Anna Walter
scheduling Coordinator
+49 203 733 2718
Dr Friedhel Brassel
Sana Clinic Duisburg
+49 203 733 2750
France:
Prof George’s Rodesch
Hospital Foch in Paris
+31-1 46 25 26 60
secretary +31-1 46 25 25 26
UK:
Dr Adam Rennie
Nurse Coordinator:
Claire Toolis
Poland:
Dr. Krzysztof Kadziołka
Canada:
Sick Kids of Toronto
Dr. Peter Dirks
Dr. Prakash Muthushawmi
India:
Dr Srinivasan Paramasivam
Apollo Hospital Chennai
Drsrinivasan_p@apollohospitals.com
Secretary Mr Srikanth
+919840045262
Egypt:
Dr Hassan Farouk
cairo University
Saudi Arabia:
Abdullah Alboridy
Brazil:
Dr. Mário de Barros Faria
+55 51 33114210
Travel Resources
Aircare Alliance (one stop to apply for 57 flight assistance organizations)
Childrens Flight of Hope (provides travel assistance for duration of treatment until age 18) childrensflightofhope.com
Email:
connect@cfoh.org
phone: 919-466-8593
miracle Flights - 800-359-1711 free flights
Angel Flight East (215) 358-1900 ffree Flights for New England states
Angel Flight Soars 770-452-7958 free Flights from the south
Contact Delta and other airlines directly and ask for Medical Emergency Discounts (usually a 10-15% discount and can be changed without fees)
Housing
Ronald McDonald House: set up housing though hospital social worker (main housing for NYC Dr Berenstein/Fifi
Boston:
social worker for NICU to help setup housing:
Kelly Curran: 617-355-0760 kelly.curran@childrens.harvard.edu
providing housing for families with children at Boston’s Children Hospital.
Patient Family Housing Housing for patients families in Boston.
Familyhousing@childrens.Harvard.edu
617-919-3456
-Yawkey Family Inn $30 a night
-Bon Apartments $75 a Night
Contact Marlene at VOGM Support Network for more free housing in the Boston Area.
Request Medical Travel Expense Assistance
Many children with Vein of Galen Malformations (VOGM) travel for treatment due to a lack of experienced providers. The VOGM Support Network raises money to offset travel costs when travel is required for treatment. Treatment includes, but is not limited to, angiograms, embolizations, endoscopic third ventriculostomies (ETV), shunts, and experimental treatments for VOGM related complications.
