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Where to get care for Gliomatosis Cerebri?

As with all pediatric cancers, care should be delivered at specialized centers where multidisciplinary teams can provide not only expert diagnostics and experienced medical, surgical and radiation oncologists, but also psychosocial support, neuro-psychological testing and specialized school plans, all delivered in a child- and family-sensitive and friendly environment.

Our personal experience was at Dana-Farber Cancer Institute / Children’s Hospital Boston. We received the very best medical care available from a complete team of brilliant and caring professionals and highly recommend this facility. We had the availability of multiple treatment options, access to the most recent research options and support for our medical, social, emotional, and financial needs.  Mark Kieran MD PhD Director of Pediatric Neuro-oncology was involved in Anna's care. Kathy Warren MD PhD is now Director of Pediatric Neuro-oncology at Dana-Farber


Other hospitals with research interest and experience treating Gliomatosis Cerebri include:

In the United States:

  • Weill Cornell Medical Center, NewYork-Presbyterian Hospital, NYC NY  Jeffrey Greenfield, MD

  • National Institutes of Health, Bethesda MD   

  • National Children’s Medical Center, Washington DC  Roger Packard MD

  • Lucille Packard Children’s Hospital at Stanford, CA   Michelle Monje MD PhD

In Europe:​

  •  Hospital Sant Joan de Deu  Barcelona, Spain      Andres Morales MD Ph

  • Institute of Cancer Research   Chris Jones PhD  researcher

Top Rated US Hospitals for Pediatric Cancer

US News and World Reports rated the TOP 20 US Pediatric Cancer Centers for 2019-20

  1. Dana-Farber / Boston Children’s Hospital    Boston MA

  2. St Jude Children’s Research Hospital      Memphis TN

  3. Texas Children’s Hospital    Houston TX

  4. Nationwide Children’s Hospital    Columbus Ohio

  5. Johns Hopkins Children’s Center    Baltimore MD

  6. Cincinnati Children's Hospital  Cincinnati OH

  7. Children’s Hospital of Philadelphia     Philadelphia PA

  8. Children's Healthcare of Atlanta   Atlanta GA

  9. Children's National Medical Center  Washington D.C.

  10. Children’s Hospital of Los Angeles    Los Angeles CA

  11. Seattle Children's  Seattle WA

  12. UCSF Benioff Children's Hospital  SanFrancisco and Oakland CA

  13. Sloan Kettering Childrens Cancer Center  NY, NY

  14. Monroe Carell Jr. Children's Hospital at Vanderbilt  Nashville TN

  15. Riley Hospital For Children at IU Health, Indianapolis IN

  16. Children’s Hospital Colorado    Aurora, CO

  17. Ann & Robert Lurie Children's Hospital Chicago  Chicago, IL

  18. Lucile Packard Childrens Hospital   Stanford, CA

  19. CHOC Childrens Hospital   Orange, CA

  20. Cleveland Clinic  Cleveland, OH

What to Look for In a Hospital / Clinic

Pediatric NeuroOncologists  - Not all hospitals have Pediatric NeuroOncologists who specialize in Brain Tumors. You want to be treated by a Pediatric NeuroOncologist. They specialize in treating brain tumors and therefore have a greater opportunity to have more experience and the ability to stay more current with research and treatment options.


Support services / programs for children and / or teens – the social and support aspects of treatment are very important in addition to the clinical treatment you/your child will receive. It is important for many to be able to meet others and have a support network. Most major cancer treatment centers will have age appropriate support programs, as well as psychologists and psychiatrists to support the emotional burdens of this difficult disease.


Availability of Clinical Trials – not all patients will respond to the standard treatments of radiation and traditional chemotherapy. You want to be in a treatment center which offers you the option of Clinical Trials of new treatment options that are not yet approved by the FDA. You may decide not to opt in to a Clinical Trial, but these are the facilities which make these options available to you.


Hospital’s participation in one or more national programs of collaborative research such as:

The Children’s Oncology Group (COG), a National Cancer Institute supported clinical trials group, is the world’s largest organization devoted exclusively to childhood and adolescent cancer research.

Pediatric Brain Tumor Consortium, a group of 11 institutions in the United States investigating novel approaches to the treatment of this and many other types of brain tumors. 

Pediatric Oncology Therapeutic Experimental Investigators Consortium (POETIC), a collaborative clinical research group offering experimental therapies to patients with relapsed or refractory disease.  


Additional Considerations

Availability of MRI machines in the OR – this is not available in many hospitals yet, but is becoming more available. Having an MRI in the Operating Room allows the Neurosurgeon the ability to check the location of a tumor, plan the best approach to a tumor in a difficult location, as well as in a non-infiltrative tumor, being able to check that the tumor is fully removed.


Additional Specialists and Complementary or Alternative Medicine - Many specialized brain tumor treatment centers have now added experts in complementary or alternative medicine (CAM). These treatments, including acupuncture/acupressure, therapeutic touch, massage, herbs and dietary recommendations, can also help to control pain and side effects of therapy. Talk to your child’s physician about whether CAM might be a viable option of treatment.

You may also find the services of Physical Therapists, Occupational Therapists, Speech Therapists (for swallowing issues) and Dietitians to help with nutrition and feeding issues. Music and Art Therapists are also available through many Visiting Nurse Associations, Palliative Care Programs and InPatient Programs. 

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