# OMS Manual/Chapter 22

CHAPTER 22 - MEDICAL OPTIONS FOR OMS AND NEUROBLASTOMA PATIENTS

## Discussion:

While there is no single definition in the world for rare diseases, OMS easily meets the generally accepted definitions whether in the US, Europe, or Asia. With that in mind, OMS patients must take care in finding the appropriate medical treatment. In most instances, OMS patients must realize that the expert is not the local pediatrician, neurologist, or oncologist. While it is vital to have good local resources to implement the treatment protocol, it is important to allow the OMS specialists and researchers be involved in the diagnosis and development of the treatment protocol to be implemented. In short, there are likely fewer than 100 doctors and 50 hospitals in the world that should be prescribing the treatment protocol of the patient.
To find information on doctors, you can check this website
Below are the lists of some of the more prominent doctors, researchers, and hospitals leading the charge in OMS treatment protocols. Alignment of these medical resources with the local medical staff willing to implement the protocol will increase the chances for better results.

## OMS Researchers:

The doctors listed below have worked with numerous OMS patients or have done extensive research in OMS. Many of these doctors stay connected with one another as treatment protocols mature. If you need to contact one of these doctors, you can search for their email address on the internet.
ENGLAND:
* Dr Bethan Lang, John Radcliffe Hospital, Oxford, England
* Dr. Carlos de Souza, Department of Neurology, Great Ormond Street Hospital for Children, London WC1N3JH
* Dr. Michael Pike, Department of Paediatrics (Paediatric Neurology), John Radcliffe Hospital, Headington, Oxford, OX3 9DU
SWITZERLAND:
* Dr Andrea Klein, Childrens Hospital Zurich, Zurich Switzerland
UNITED STATES:
* Robert B. Darnell, M.D., Ph.D., Principal Investigator Head, Laboratory of Molecular Neuro-Oncology,
Investigator, Howard Hughes Medical Institute, The Rockefeller University
* Dr Pedro De Alarcon, University of Illinois, College of Medicine at Peoria, Peoria Illinois
* Mark P. Gorman, MD, Children's Hospital Boston, Neurology, 300 Longwood Avenue, Fegan 11, Boston, MA 02115
* Wendy G. Mitchell , M.D., Professor of Clinical Neurology, Keck School of Medicine, CHL Mail Stop 82, 0000
* Michael R. Pranzatelli, MD, Professor of Neurology and Pediatrics, SIU School of Medicine, National Pediatric Myoclonus Center, 751 North Rutledge, Suite 3504, Springfield, IL 62702, omsusa@siumed.edu , www.OMSUSA.org
* Dr John Maris, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania

## Doctors who have treated OMS patients:

The doctors listed below have previously treated OMS patients and have worked with OMS specialists and researchers listed above on treatment protocols. These doctors are neurologists, oncologists, or pediatricians and have a good understanding of the disease and how to work with the specialists and the patients. If you need to contact one of these doctors, you can search for their email address on the internet.
UNITED STATES:
* Dr. William Graf, Yale Children's Hospital, Hartford, CT
* Dr. JB Le Pichon, Children's Mercy Hospital Kansas City, MO
* Dr. Irwin, Mary Bridge Hospital Seattle, WA
* Dr. Amanda Guetersloh, Pediatrician Lubbock, Texas
* Dr. Angus Wilfong, Texas Children's Hospital Houston, Texas
* Dr. Tim Lotze, Texas Children's Hospital Houston, Texas
* Dr. Don Gilbert, Cincinnati Children's Hospital Cincinnati, Ohio
* Dr Angela Jae Sievert, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
AUSTRALIA:
* Dr Dale Russell, Sydney, Australia
BRAZIL:
* Dr Francisco Pedrosa, Recife, Brazil
COLUMBIA:
* Dr Martha Vizcaino, Bogota, Columbia
MEXICO:
* Dr Paula Aristizaba, Rady Children's Hospital San Diego, Pediatric Hematology / Oncology, Coordinator International Hematology / Oncology, Medical Director Twining Program St Jude - RCHSD – Tijuana, San Diego and Tijuana
* Dr Oscar Gonzalez-Ramella, Guadalajara Mexico
PORTUGAL:
* Dr Nuno Lobo Antunes, Lisbon, Portugal
ROMANIA:
* Dr Dana Craiu, Bucharest, Romania

## Hospitals that have treated a number of OMS cases:

ENGLAND:
* John Radcliffe Hospital, Oxford, England
* Great Ormond Street Hospital for Children, London, England WC1N3JH
MEXICO:
* Rady Children’s Hospital San Diego, Twinning program with St Jude – RCHSD – Tijuana, San Diego and Tijuana
SWITZERLAND:
* Children’s Hospital Zurich, Zurich Switzerland
UNITED STATES:
* Children’s Hospital Boston, 300 Longwood Avenue, Fegan 11, Boston, MA 02115
* SIU School of Medicine, 751 North Rutledge, Suite 3504, Springfield, IL 62702
* Children’s Hospital of Philadelphia, Philadelphia, PA
* Children’s Hospital Los Angeles, Los Angeles, CA
* Texas Children’s Hospital, Houston, TX
* Dell Children's Hospital, Austin TX
* Children's Mercy Hospital, Kansas City, MO

## Neuroblastoma Doctors and Researchers:

The doctors listed below are active in neuroblastoma research and treatment. If you need to contact one of these doctors, you can search for their email address on the internet.
UNITED STATES:
* Dr Giselle Sholler, Van Andel Research Institute, 333 Bostwick Avenue NE, Grand Rapids, MI 49503, 616-234-5495
* William Ferguson, MD, Cardinal Glennon Children’s Medical Center, Saint Louis University School of Medicine, 1465 S. Grant Blvd, Saint Louis, MO 63104, 314-577-5638
* William Roberts, Rady Children’s Hospital San Diego, MC5035, San Diego, CA 92123-4282, 858-966-5811
* Don Eslin, Center for Children’s Cancer and Blood Disorders, Arnold Palmer Hospital for Children, M.D.Anderson Cancer Center Orlando, 92 West Miller St, MP318, Orlando, FL 32806, 321-841-8588
* Nehal S. Parikh, MD, Connecticut Children’s Medical Center, Division of Hematology/Oncology 2J,
282 Washington Street, Hartford, CT 06106, 860-545-9630
* Dr Andre Bachman , Department of Pharmaceutical Sciences, College of Pharmacy, University of Hawaii at Hilo

## External Links:

* www.omslife.org :
* www.omsusa.org
* www.NMTRC.org
* www.cncfhope.org
* www.ucomparehealthcare.com