Treatment Facilities

 

Hypothalamic Hamartoma is a rare brain tumor that is best treated at an epilepsy specialty center. Given the rarity of the diagnosis, most neurologists, neurosurgeons and centers are unlikely to encounter and treat even one HH patient let alone a significant volume of patients.  It is critical to identify a neurology team including an epileptologist (a neurologist who specializes in epilepsy, seizure and treatments) and neurosurgeon who:

  • understands HH and is up to date on treatment and care,
  • can offer treatments individualized to the patient and their tumor,
  • has the expertise and practical experience to achieve the best outcomes,
  • is affiliated with a hospital that offers multi-disciplinary coordinated care to support pre and post-surgical evaluations and long-term management

It is important to note not all treatments are available at all centers in the United States and throughout the world. And some centers may develop a particular expertise in one treatment, while other centers may pride themselves on the breadth of treatments they offer.

For complete information regarding the individual HH Treatment Facilities, please scroll down or click on the map provided.

Barrow Neurological Institute Hypothalamic Hamartoma Program

350 W. Thomas Road
Neuroscience Tower, 5th Floor
Phoenix, AZ 85013

Contact: Maggie Bobrowitz, RN, MBA
Email: margaret.bobrowitz@dignityhealth.org
Phone: (602) 406-7585

Phoenix Children's Hypothalamic Hamartoma Center

1919 E. Thomas Road
Ambulatory Building, 4th Floor
Phoenix, AZ 85016

Contact: Diana LaRocque, RN, BSN, CPN
Email: dlarocque@phoenixchildrens.com
Phone: (602) 933-0468

Children's Medical Center Dallas

1935 Medical District Drive
Dallas, TX 75235

Contact: Lauren Suttle
Email: n/a
Phone: (214) 456-2768

 

Cook Children Medical Center

801 Seventh Avenue
Fort Worth, TX 76104

Contact: n/a
Email: saleem.malik@cookchildrens.org
Phone: n/a

Miami Children's Health System / Nicklaus Children's Hospital

3100 SW 62nd Avenue
Miami, FL 33155

Contact: n/a
Email: pat.dean@mch.com
Phone: n/a

Northwell Health/North-Shore University Hospital

300 Community Drive
Manhasset, NY 11030

Contact: n/a
Email: n/a
Phone: (516) 325-7061

Primary Children's Hospital, University of Utah

100 N Mario Capecchi Drive
Salt Lake City, UT 84113

Contact: Kimberly Orton, RN
Email: kimberly.orton@hsc.utah.edu
Phone: (801) 213-7758

Seattle Children's Hospital/Univ of Washington

4800 Sand Point Way NE
Seattle, WA 98105

Contact: Kate Rimmer
Email: kate.rimmer@seattlechildrens.org
Phone: (206) 987-2958

Boston Children’s Hospital

300 Longwood Avenue
Boston, MA 02115

Contact: Cheryl Cahill, RN
Email: n/a
Phone: (617) 355-2413

NYU Langone Medical Center

550 First Avenue
New York, NY 10016

Contact: n/a
Email: n/a
Phone: (646) 558-0803

Texas Children's Hospital

6621 Fannin Street
Houston, TX 77030

Contact: Truzella Benton
Email: tebenton@texaschildrens.org
Phone: (832) 822-0996

The Royal Children's Hospital Melbourne

50 Flemington Road
Parkville, Victoria, 3052

Contact: Jeremy Freeman
Email: jeremy.freeman@rch.org.au

The Hospital for Sick Children

555 University Avenue
Toronto, Ontario
Canada M5G 1X8

Contact: n/a
Email: n/a
Phone: 416-813-1500

Aix Marseille University Timone Hospital

278 Rue Saint-Pierre
13005 Marseille, France

Contact: Professor Jean Regis
Email: JeanMarie.REGIS@ap-hm.fr

Epilepsy Center, University Hospital of Freiburg

Breisacher Str. 64
D-79106 Freiburg, Germany

Contact: Dr. Kerstin Klotz
Email: Kerstin.alexandra.klotz@uniklinik-freiburg.de

Beijing Tiantan Hospital

6 Tiantan Xili,
Chongwen District,
Beijing, China
 
Contact: Professor Chunde Li

Xiangya Hospital, Central-South University

932 South Lushan Road
Changsha Hunan, China
 
Contact: Dr. Zhi-Quan Yang

Grenoble-Alpes University Hospital

BP217X,
38043 Grenoble Cedex, France
 
Contact: Professor Philippe Kahane

Rothschild Foundation Hospital

29 Rue Manin
75019 Paris, France
 
Contact: Dr. Christine Bulteau

Bambino Gesu Children’s Hospital

Piazza di Sant’Onofrio, 4
00165 Roma, Italy
 
Contact: Dr. Luca De Palma

Nishi-Niigata Chuo Hospital

1 Chome-14-1 Masago
Nishi Ward, Niigata
950-2085, Japan
Contact: Dr. Shirozu

Lausanne University Hospital (CHUV)

Rue du Bugnon, 46
Ch-1011 Lausanne
 
Contact: Professor Marc Levivier’s assistant Danielle Grin

Great Ormond Street Hospital for Children

Great Ormond Street
WC1N 3JH London, United Kingdom
 
Contact: Professor J Helen Cross

Hôpital des Spécialités

Centre National de Réhabilitation et des Neurosciences
B.P : 6444
Rabat-Instituts, 10112, Rabat – Maroc
Contact: Dr Adyl Melhaoui
Email: adymelh@yahoo.com

The following list of hospitals offer services for HH patients. Some hospitals offer comprehensive multi-disciplinary care, while others offer very specialized treatments. Hope for HH does not endorse any hospitals or doctors or represent that this is a complete list of hospitals providing HH treatment and care.

As you research hospitals and their services, we encourage you to ask each:

  • If they are a full service epilepsy center?
  • How many HH patients they have treated? And how recently?
  • What treatments and services they provide?
  • And whether multi-disciplinary treatment and post-treatment management is available?

You can also Find a Doctor on the AES website and find an epilepsy center on the NAEC website.

US Treatment Facilities by State | Click here for International Facilities

The United States treatment facilities below were compiled following a survey completed in 2017. All institutions listed are NAEC level 4 Centers; have a dedicated HH or epilepsy coordinator; have treated a minimum of 6 HH patients, offer multi-disciplinary care, and provide consultations and second opinions. For each facility, we have also included whether they treat pediatric cases and/or adults, which treatments are available, and what ancillary services are available.

ARIZONA

Barrow Neurological Institute Hypothalamic Hamartoma Program

350 W. Thomas Road

Neuroscience Tower, 5th Floor

Phoenix, AZ 85013

Contact: Maggie Bobrowitz, RN, MBA

Email: margaret.bobrowitz@dignityhealth.org

Phone: (602) 406-7585

HH Program or Clinic: Yes

Provide 2nd Opinion: Yes, contact coordinator

Patient Type: Adults

Treatment: Surgical, Gamma Knife, MRI Guided Laser, Ketogenic Diet, Vagus Nervie Stimulation (VNS)

Multiple disciplinary care: Psychiatry, Neuropsych, Endocrine, Nutrition

Website

Phoenix Children's Hypothalamic Hamartoma Center

1919 E. Thomas Road

Ambulatory Building, 4th Floor

Phoenix, AZ 85016

Contact: Diana LaRocque, RN, BSN, CPN

Email: dlarocque@phoenixchildrens.com

Phone: (602) 933-0468

HH Program or Clinic: Yes

Provide 2nd Opinion: Yes, contact coordinator

Patient Type: Pediatric

Treatment: Surgical, Gamma Knife, MRI Guided Laser, Ketogenic Diet, Vagus

Multiple disciplinary care: Psychiatry, Neuropsych, Endocrine, Nutrition

Website

FLORIDA

 

Miami Children's Health System / Nicklaus Children's Hospital

3100 SW 62nd Avenue

Miami, FL 33155

Contact: n/a

Email: pat.dean@mch.com

Phone: n/a

HH Program or Clinic: No

Provide 2nd Opinion: Yes, contact coordinator

Patient Type: Adult and Pediatric

Treatment: Surgical, MRI Guided Laser, Ketogenic Diet, Vagus Nervie Stimulation (VNS), Deep Brain Stimulation (DBS)

Multiple disciplinary care: Psychiatry, Neuropsych, Endocrine, Nutrition

Website

 

NEW YORK

 

Northwell Health/North-Shore University Hospital

300 Community Drive

Manhasset, NY 11030

Contact: n/a

Email: n/a

Phone: (516) 325-7061

HH Program or Clinic: Yes

Provide 2nd Opinion: Yes

Patient Type: Adult and Pediatric

Treatment: Surgical, Gamma Knife, MRI Guided Laser, Ketogenic Diet, Vagus Nervie Stimulation (VNS), Deep Brain Stimulation (DBS)

Multiple disciplinary care: Psychiatry, Neuropsych, Endocrine, Nutrition

Website

NYU Langone Medical Center

550 First Avenue

New York, NY 10016

Contact: n/a

Email: n/a

Phone: (646) 558-0803

HH Program or Clinic: No

Provide 2nd Opinion: Yes

Patient Type: Adult and Pediatric

Treatment: Surgical, Gamma Knife, MRI Guided Laser, Ketogenic Diet, Vagus Nervie Stimulation (VNS), Deep Brain Stimulation (DBS)

Multiple disciplinary care: Psychiatry, Neuropsych, Endocrine, Nutrition

Website

 

MASSACHUSETTS

 

Boston Children’s Hospital

300 Longwood Avenue

Boston, MA 02115

Contact: Cheryl Cahill, RN

Email: n/a

Phone: (617) 355-2413

HH Program or Clinic: No

Provide 2nd Opinion: Yes

Patient Type: Adult and Pediatric

Treatment: Surgical, MRI Guided Laser, Ketogenic Diet, Vagus Nervie Stimulation (VNS), Deep Brain Stimulation (DBS)

Multiple disciplinary care: Psychiatry, Neuropsych, Endocrine, Nutrition

Website

 

TEXAS

 

Children's Medical Center Dallas

1935 Medical District Drive

Dallas, TX 75235

Contact: Lauren Suttle

Email: n/a

Phone: (214) 456-2768

HH Program or Clinic: No

Provide 2nd Opinion: Yes

Patient Type: Pediatric

Treatment: Surgical, MRI Guided Laser, Ketogenic Diet, Vagus Nervie Stimulation (VNS)

Multiple disciplinary care: Psychiatry, Neuropsych, Endocrine, Nutrition

Website

Cook Children Medical Center

801 Seventh Avenue

Fort Worth, TX 76104

Contact: n/a

Email: saleem.malik@cookchildrens.org

Phone: n/a

HH Program or Clinic: Yes

Provide 2nd Opinion: Yes

Patient Type: Pediatric

Treatment: Surgical, Gamma Knife, MRI Guided Laser, Ketogenic Diet, Vagus Nervie Stimulation (VNS)

Multiple disciplinary care: Psychiatry, Neuropsych, Endocrine, Nutrition

Website

Texas Children's Hospital

6701 Fannin St, Suite 1230

Houston, TX 77030

Contact: Georgina Cedillo, Epilepsy Surgery Program Liaison

Email: gvcedill@texaschildrens.org

Phone: (832) 822-3952

Contact: Laura Cairampoma, RN, BSN, Clinical Program Coordinator

Email: lxcairam@texaschildrens.org

Phone: (832) 822-1100

HH Program or Clinic: Yes

Provide 2nd Opinion: Yes

Patient Type: Pediatric

Treatment: Surgical, Gamma Knife, MRI Guided Laser, Ketogenic Diet, Vagus Nervie Stimulation (VNS), Deep Brain Stimulation (DBS)

Multiple disciplinary care: Psychiatry, Neuropsych, Endocrine, Nutrition

Website

 

UTAH

 

Primary Children's Hospital, University of Utah

100 N Mario Capecchi Drive

Salt Lake City, UT 84113

Contact: Kimberly Orton, RN

Email: kimberly.orton@hsc.utah.edu

Phone: (801) 213-7758

HH Program or Clinic: No

Provide 2nd Opinion: Yes, contact coordinator

Patient Type: Pediatric

Treatment: Surgical, MRI Guided Laser, Ketogenic Diet, Vagus Nervie Stimulation (VNS)

Multiple disciplinary care: Psychiatry, Neuropsych, Endocrine, Nutrition

Website

 

WASHINGTON

 

Seattle Children's Hospital/Univ of Washington

4800 Sand Point Way NE

Seattle, WA 98105

Contact: Kate Rimmer

Email: kate.rimmer@seattlechildrens.org

Phone: (206) 987-2958

HH Program or Clinic: No

Provide 2nd Opinion: Yes

Patient Type: Pediatric

Treatment: Surgical, MRI Guided Laser, Ketogenic Diet, Vagus Nervie Stimulation (VNS)

Multiple disciplinary care: Psychiatry, Neuropsych, Endocrine, Nutrition

Website

International Treatment Facilities

Other expert epilepsy centres in Europe can be found through through EpiCARE. Each centre is a member of EpiCARE and as such has been judged to meet the standard of expertise in the rare and complex epilepsies required by the EU to be part of this rare disease network.

AUSTRALIA

 

The Royal Children's Hospital Melbourne

50 Flemington Road
Parkville, Victoria, 3052

Contact: Jeremy Freeman
Email: jeremy.freeman@rch.org.au

Website

 

CANADA

 

The Hospital for Sick Children

555 University Avenue
Toronto, Ontario
Canada M5G 1X8

Website

 

CHINA

 

Beijing Tiantan Hospital

6 Tiantan Xili,
Chongwen District,
Beijing, China

Contact: Professor Chunde Li
Email: ichunde@hotmail.com

 

Xiangya Hospital, Central-South University

932 South Lushan Road
Changsha Hunan, China

Contact: Dr. Zhi-Quan Yang
Email: y66406914@163.com

Website

 

FRANCE

 

Aix Marseille University Timone Hospital

278 Rue Saint-Pierre
13005 Marseille, France

Contact: Professor Jean Regis
Email: JeanMarie.REGIS@ap-hm.fr

Website

 

Grenoble-Alpes University Hospital

BP217X,
38043 Grenoble Cedex, France

Contact: Professor Philippe Kahane
Email: philippe.kahane@univ-grenoble-alpes.fr

Website

 

Rothschild Foundation Hospital

29 Rue Manin
75019 Paris, France

Contact: Dr. Christine Bulteau
Email: cbulteau@for.paris

Website

 

GERMANY

 

Epilepsy Center, University Hospital of Freiburg

Breisacher Str. 86,
79110 Freiburg im Breisgau, Germany

Contact: Dr. Kerstin Klotz
Email: Kerstin.alexandra.klotz@uniklinik-freiburg.de

Website

 

ITALY

 

Bambino Gesu Children’s Hospital

Piazza di Sant’Onofrio, 4
00165 Roma, Italy

Contact: Dr. Luca De Palma
Email: luca.depalma@opbg.net

Website

 

JAPAN

 

Nishi-Niigata Chuo Hospital

Niigata, Japan

Contact: Dr. Shirozu
Email: hiroshirozu@hotmail.co.jp

 

North Africa

 

Hôpital des Spécialités

Centre National de Réhabilitation et des Neurosciences
B.P : 6444
Rabat-Instituts, 10112, Rabat – Maroc

Contact: Dr. Adyl Melhaoui
Email:adymelh@yahoo.com

 Website

SWITZERLAND

 

Lausanne University Hospital (CHUV)

Rue du Bugnon, 46
Ch-1011 Lausanne

Contact: Professor Marc Levivier’s assistant Danielle Grin
Email: danielle.grin@chuv.ch

Website

 

UNITED KINGDOM

 

Great Ormond Street Hospital for Children

Great Ormond Street
WC1N 3JH London, United Kingdom

Contact: Professor J Helen Cross
Email: h.cross@ucl.ac.uk

Website

 

Other expert epilepsy centres in Europe can be found through through EpiCARE. Each centre is a member of EpiCARE and as such has been judged to meet the standard of expertise in the rare and complex epilepsies required by the EU to be part of this rare disease network.

 

Disclaimer: Hope for HH makes best efforts to maintain a list of treatment centers in the US and abroad. However, Hope for HH does not endorse any hospitals or doctors or represent that this is a complete list of hospitals providing HH treatment and care. Contact information is provided as a courtesy to HH patients. The Site and Content are for informational purposes only, and you assume full responsibility and risk for the appropriate use of information contained herein. If you are aware of any information that is out of date, please let us know at info@hopeforhh.org