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Vein Of Galen Malformation 
Support Network
  • Home
  • Just Diagnosed
    • Welcome VOGM Families
    • FAQ
    • Resources
    • Get Support
    • Ambassador Program
  • Our Stories
    • VOGM Warrior Stories
    • Blog
    • Testimonials
  • Donate and Support
  • SHOP to Support
  • Special Events
    • 2025 Great Galen Gala
    • Walk Your Way
    • Bangor Santa Appointments
    • 2024 Great Galen Gala
    • Infants and Infantry 5k
  • About Us
    • About Us
    • Medical Advisory Board
    • Our Partners
  • Research Grant
  • Contact Us
  • Medical Disclaimer

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Print VOGM Information Booklet

You can also order free VOGM information booklets to be sent to your MFM or Pediatric Office, Children’s Hospital etc for your future patients and for updated info for your providers. Please email us at info@vogm.org to place an order 

Download PDF

VOGM Resources

A Waiting room with blue and wood chairs against a wall of windows.

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

daniensy.morel@mountsinai.org

Jessica Bonet PA

jessica.bonet@mountsinai.org

Dr Johanna Fifi

johanna.fifi@mountsinai.org

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

anba.walter@sana.de

Dr Friedhel Brassel 

Sana Clinic Duisburg

+49 203 733 2750

friedhelm.brassel@sana.de


France:

Prof George’s Rodesch

Hospital Foch in Paris
+31-1 46 25 26 60

secretary +31-1 46 25 25 26

g.rodesch@hospital-foch.com


UK: 

Dr Adam Rennie 

GOSHadam.rennie@nhs.net

Nurse Coordinator: 

Claire Toolis

Claire.toolis@gosh.nhs.uk 

Poland:

Dr. Krzysztof Kadziołka

Recepcja@mdclinic.pl


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

Faroukkeden@yahoo.com


Saudi Arabia:

Abdullah Alboridy 

Almaei1@yahoo.com

Brazil:

Dr. Mário de Barros Faria

mfaria@hcpa.edu.br

+55 51 33114210

Find out more

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

Miracle Travel Works

Angel flights 

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)


More free medical flights

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


Hospitality Homes Boston 

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.

Find out more

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.

Request Medical Travel Expense Assistance

VOGM Brochure to print

VOGM Medical Brochure for Medical Providers and Families

Please print or reach out to have brochures sent to your facility to share with medical providers (IR/Neirosurgeon/MFM/OB/Neuro/NICU) and vogm families to better understand vogm and the resources and support available to them. 

Download PDF

VOGM: A New Approach to Care

Dr Orbach from Bostons Children‘s Hospital explains VOGM and treatment protocol In addition to new in utero embolization trials. 

NICU and Grief & Bereavement Support

At Vein of Galen Malformation Support Network, we strive to bring people together and create a sense of belonging and connection within our communities. We are a nonprofit organization committed to making a positive impact through {insert mission Thank you for joining us in this journey.

Learn More

Insurance Support


  • The Patient Advocate Foundation is a non-profit that provides direct services to patients with chronic, life threatening and debilitating diseases to help access the care and treatment recommended by their doctor. https://www.patientadvocate.org
  • The Patient Advocacy Network (PAN) work to help underinsured people with life-threatening, chronic and rare diseases get the medications and treatments they need by assisting with their out-of-pocket costs and advocating for improved access and affordability. www.panfoundation.org 

New Fetal Clinical Trial for VOGM

New fetal clinical trial for Vein of Galen malformation

A multidisciplinary group of physicians at Boston Children’s Hospital and Brigham and Women’s Hospital, under the leadership of Dr. Darren Orbach (neurointerventional radiology), has developed a fetal interventional procedure for the treatment of vein of Galen malformation in utero. The goal of the procedure is to significantly diminish flow through the malformation before birth. The physicians have significant experience with vein of Galen malformations and have been worldwide pioneers in the development of similar fetal interventions for congenital heart conditions. While many of our vein of Galen patients do very well with conventional treatment after birth, there remains a significant fraction who will develop severe symptoms within a day or two after delivery, and this subgroup has a high risk of morbidity and mortality, even with expert care. We have developed a method, based on fetal MRI scans, for predicting which fetuses are likely to have this kind of aggressive clinical presentation, and the new fetal intervention is aimed specifically at this group. The intervention is being offered as a clinical trial, with the aim of assessing whether the fetal intervention is safe and whether it improves prognosis in terms of survival and neurocognitive development. Interventions will be performed at Brigham and Women’s Hospital by a team of physicians from both institutions; the Brigham and Women’s team is led by Dr. Louise Wilkins-Haug (high-risk maternal-fetal medicine). Candidates for this intervention must have in utero diagnosis of vein of Galen malformation, and will be assessed at the Boston Children’s Hospital Maternal Fetal Care Center for appropriate fit for the trial. Interested patients should contact the Maternal Fetal Care Center at Boston Children’s Hospital, at 617-355-6512.

Download PDF

Cerebral Palsy Support

Cerebral Palsy Guide is a national support organization dedicated to educating individuals and families about cerebral palsy. They strive to provide answers and guidance to ensure that families receive the assistance that they need to help improve their overall quality of life. 

More Info Here

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