Locate A Provider

Healthcare providers with expertise or interest in RYR-1-related diseases are invited to apply and be listed on our site by clicking the application button below.

The information on this website is provided for general informational purposes only and is not intended to be medical advice or an official endorsement. The physicians listed on this website are independent practitioners and are not employees or agents of the organization, and the organization receives no compensation or other consideration from them in exchange for listing them. The organization does not endorse, recommend, or guarantee the quality, competence, or suitability of any physician or the services they provide, and is not responsible for any inaccurate information physicians provide in their listings. You are solely responsible for selecting and verifying the credentials of any physician you contact through this website.

 

Provider Application

California
Los Angeles, CA

Perry Shieh, MD, PhD

Telephone: (310) 794-1195 & (310) 794-7491

UCLA Medical Center

UCLA Neurological Services

300 UCLA Medical Plaza B-200
Los Angeles, CA 90095

Orange, CA

Tahseen Mozaffar, MD, FAAN, FANA

Namita Goyal, MD

Telephone: (714) 456-2332
Email: mozaffar@uci.edu

UC Irvine-MDA ALS and Neuromuscular Center

UC Irvine Medical Center’s Manchester Pavilion

200 S. Manchester Avenue

Suite 110
Orange, CA 92868

Palo Alto, CA

John W. Day, MD, PhD

Karolina Watson, Pediatric Nurse Practitioner

Telephone (New Adult Patients): (650) 723-6469
Telephone (New Pediatric Patients): (650) 723-0993

Division of Neuromuscular Medicine

Stanford Neuroscience Health Center

213 Quarry Road
Mail Code 5979
Palo Alto, CA 94304

San Diego, CA

Chamindra Laverty, MD

Telephone (New Patient Registration): (858) 657-8540
Telephone (Existing Patients): (858) 657-8540

UC San Diego Health

4510 Executive Drive
Suite 325
San Diego, CA 92121

Colorado
Aurora, CO

Melissa Wright, MD, PhD

 

Michele Yang, MD

Hattie Foster, BSN, RN, CPN (Clinic Coordinator)

Telephone: (720) 777-2806

Fax: (720) 777-7220

Neuromuscular Clinic

Children’s Hospital Colorado

13123 E. 16th Avenue

B-155
Aurora, CO 80045

 

District of Columbia
Washington, D.C.

Diana Bharucha-Goebel, MD

Sarah Wright, DO

Kathleen Smart (Clinic Coordinator)

Children’s National Hospital

111 Michigan Avenue NW
Washington, D.C. 20010

Florida
Gainesville, FL

Carla Zingariello, DO

Bayleigh Dowling (Clinic Coordinator)

University of Florida

Department of Pediatrics

Division of Neurology

PO Box 100296
Gainesville, FL 32610

Orlando, FL

Omer Abdul Hamid, MD

Rulla Starr (Clinic Coordinator)

Telephone: (407) 650-7715

Nemours MDA clinic

6535 Nemours Parkway

Orlando, FL 32827

Georgia
Atlanta, GA

Meredith Greer, MD

Telephone: (404) 712-7533

The Emory Sleep Center in The Emory Brain Health Center

12 Executive Park Drive NE

Atlanta, GA 30329

Maryland
Baltimore, MD

Thomas O. Crawford, MD

Theresa Cox (Clinic Coordinator)

Telephone: (410) 955-6435

Email: thutson2@jhmi.edu

The Johns Hopkins Center for Inherited Neuromuscular Disease

600 N. Wolfe Street
Meyer 5-119
Baltimore, MD 21287

Baltimore, MD

Payam Mohassel, MD

Sharon Jackson (Sr. Medical Office Coordinator)

Johns Hopkins Outpatient Center

601 N Caroline Street
Baltimore, MD 21287

Bethesda, MD

Carsten G. Bönnemann, MD

Sandra Donkervoort, MS, CGC

National Institutes of Health

National Institute of Neurological Disorders and Stroke Neurogenetics Branch

Neuromuscular and Neurogenetic Disorders of Childhood Section

10 Center Drive

Room 2B39

MSC 1477

Bethesda, MD 20892

Massachusetts
Boston, MA

Alan Beggs, PhD (Research)

Casie Genetti, MS, CGC

Boston Children’s Hospital

3 Blackfan Circle

CLSB 15031

Boston, MA 02115

Boston, MA

Basil Darras, MD

Leslie Hotchkiss Hayes, MD, BSFS

Anellys Prieto (Clinic Coordinator)

Boston Children’s Hospital

Department of Neurology

300 Longwood Avenue

Fegan, 11th Floor

Boston, MA 02115

Minnesota
Rochester, MN

Teerin Liewluck, MD

Telephone: (507) 284-2111

Margherita Milone, MD, PhD

Emily Akkerman (Administrative Assistant)

Telephone: (507) 284-5012

Fax: (507) 284-4074

Email: milone.margherita@mayo.edu

Mayo Clinic

200 First Street SW

Rochester, MN 55905

New Jersey
Morristown, NJ

Jahannaz Dastgir, DO

Goryeb Children’s Hospital

100 Madison Avenue

Morristown, NJ 07960

New York
New York, NY

Michio Hirano, MD

Telephone: (212) 305-1319

Columbia University Medical Center

630 West 168th Street
P & S 4-423
New York, NY 10032

North Carolina
Durham, NC

Natalie Katz, MD, PhD

Trish Sexton (Nurse Coordinator)

Duke Children’s Neuromuscular Clinic

Duke University Hospital

3000 Erwin Road
Durham, NC 27705
New York, NY 10032

OHIO
Columbus, OH

Kevin Flanigan, MD

Telephone: (614) 722-2203
Fax: (614) 355-5247

MDA and Neuromuscular Clinics (adult and pediatric patients) & Center for Gene Therapy

Nationwide Children’s Hospital

700 N. Children’s Drive
Columbus, Ohio 43205

PENNSYLVANIA
Hershey, PA

Ashutosh Kumar, MBBS, FAAP

Paula Cameron (Clinic Coordinator)

Penn State Health Milton S. Hershey Medical Center

500 University Drive

Hershey, PA 17033

McKees Rocks, PA

Andrew McCarty, MS, CGC, Genetic Counselor

Clover Genetics

5827 Steubenville Pike
McKees Rocks, PA 15136

 

Via telehealth: Alaska, Arizona, Colorado, Florida, Georgia, Hawaii, Kansas, Kentucky, Maine, Missouri, Montana, Nevada, New Jersey, New York, North Carolina, Ohio, South Carolina, Texas, Tennessee, Vermont, Virginia, Washington, West Virginia, Wisconsin

Philadelphia, PA

Sabrina Yum, MD

Livija Medne, MS, CGC

John Brandsema, MD

Elizabeth Kichula, MD, PhD

Robyn Ruggia (Clinic Coordinator)

Children’s Hospital of Philadelphia

3401 Civic Center Boulevard
Philadelphia, PA 19104

Pittsburgh, PA

Joshua A. Smith, DO (adult patients only)

Rebecca Molczan, CRNP (adult patients only)

University of Pittsburgh Medical
Center

Kaufman Medical Building

3471 Fifth Avenue
Suite 810
Pittsburgh, PA 15213

Pittsburgh, PA

Hoda Z. Abdel-Hamid, MD

UPMC Children’s Hospital of Pittsburgh

4401 Penn Avenue

FP 8106
Pittsburgh, PA 15224

Pittsburgh, PA

Deanna Steele, LGC

UPMC Magee-Womens Hospital

300 Halket Street

Suite 1651
Pittsburgh, PA 15213

Texas
San Antonio, TX

Matthew P. Wicklund, MD, FAAN

Joe R. and Theresa Lozano Long School of Medicine

UT Health San Antonio

7703 Floyd Curl Drive

Mail Code 7883
San Antonio, TX 78229

Dallas, TX

Kaitlin Batley, MD

Connie Choudhary, RN (Clinic Coordinator)

UT Southwestern/Children’s Health

2350 N Stemmons Freeway
Dallas, TX 75218

Houston, TX

Lydia Sharp, MD

Sara Donahoe (Clinic Coordinator)

Telephone: (713) 798-2273

Coordinator Telephone: (713) 798-8230

Fax: (713) 798-7709

Email: LydiaJane.Sharp@bcm.edu

Department of Neurology

Baylor College of Medicine

7200 Cambridge Street

Suite 9A
Houston, TX 77030

Australia
Perth

Mark Davis, PhD, FFSc, RCPA

Neurogenetics Unit

Department of Diagnostic Genomics

PathWest Laboratory Medicine

Perth

Phillipa Lamont, MD

Department of Neurology

Royal Perth Hospital

Hospital Avenue
BoxX2213

GPO Perth 6847

Queensland

Bradley Launikonis, PhD

School of Biomedical Sciences

The University of Queensland

Brazil
São Paulo

Umbertina Conti Reed

Edmar Zanoteli (Clinic Coordinator)

Hospital das Clínicas, Faculdade de Medicina da USP

Av. Dr. Enéas de Carvalho Aguiar, 255

05403-010 – São Paulo

Canada
Toronto

Hernan D. Gonorazky M.D. CSCN Diplomate (EMG) 

Amal Warsame (Clinic Coordinator)

Division of Neurology

Hospital for Sick Children

555 University Avenue
Toronto, ON M5G 1X8

Toronto

Sheila Riazi, MSc, MD, FRCPC

Telephone: (416) 340-3128

Malignant Hyperthermia Investigation Unit

University Health Network- Toronto General Hospital

323-200 Elizabeth Street

Toronto, ON M5G 2C4

France
Grenoble

Isabelle Marty, PhD

Grenoble Institut des Neurosciences

Inserm U1216 – Eq. 4 C-MyPath

Bat. EJ Safra

Chemin Fortuné Ferrini

38700 La Tronche

Grenoble

Julien Fauré, PhD

UM Génétique Moléculaire

Maladies Héréditaires et Oncologie
Service de Biochimie

Biologie Moléculaire et Toxicologie Environnementale

Institut de Biologie et Pathologie

CHU Grenoble
CS10217
38043 Grenoble Cedex 09

Grenoble

Éric Estève, PhD

PhyMedExp

INSERM U1046 – CNRS UMR 9214

Institut Universitaire de Recherche Clinique

641 av du Doyen G. Giraud
34093 Montpellier Cedex 5

 

Montpellier

Alain Lacampagne, PhD

UMR CNRS 9214 – Inserm U1046

Physiologie et Médecine Expérimentale du Coeur et des Muscles

CHU Arnaud de Villeneuve
34295 Montpellier Cedex 05

Paris

Ana Ferreiro, MD, PhD

Neurologist & INSERM Research Director

Neuromuscular Disorders Reference Centre

Institute of Myology

Neuromyology Department

Pitié-Salpêtrière University Hospital

Bâtiment Babinksi
47-83 Boulevard de l’Hôpital
75013 Paris

India
Bangalore

Ann Agnes Mathew, MBBS, MRCPCH, FRCPCH

Ms. Deepika (Secretary)

Telephone: +91 99027 97944

Synapse Neuro Centre

Bangalore Baptist Hospital


 

Thursdays are neuromuscular OPD days there and appointments are through the national helpline of a patient support organization called- ORDI (Organisation for Rare Diseases India).

 

Telephone: +91 88925 55000

 


 

Dr. Mathew sees patients online once a week and her online appointments are organized by Ms. Padma.

 

Telephone: +91 81056 83335

Israel
Haifa

Shahar Shelly, MD, PhD

Ms. Dikla Amoyal (Clinic Coordinator)

Telephone: +972 4-777-2830

Rambam Medical Center

HaAliya HaShniya St 8
Haifa, 3109601

Netherlands
Nijmegen

Nicol C. Voermans, MD, PhD

Radboud University Medical Centre

P.O. Box 9101

6500 HB Nijmegen (664)
The Netherlands

Saudi Arabia
Dammam

Momen Almomen, MD, FRCPC

Pediatric Neurology

King Fahad Specialist Hospital

South Africa
Cape Town

Prof. Jo Wilmshurst

Red Cross War Memorial Children’s Hospital

University of Cape Town

Spain
San Sebastián

Ainara Vallejo Illarramendi, PhD

Group of Neuromuscular Diseases

Neuroscience Area

Biogipuzkoa Institute

Paseo Dr. Begiristain s/n
20014 San Sebastian

Switzerland
Basel

Susan Treves, PhD

Neuromuscular Research Group

Department of Biomedicine

University Hospital Basel

Basel University

United Kingdom
London

Heinz Jungbluth, MD, PhD, MRCP, MRCPCH

Email: Heinz.Jungbluth@kcl.ac.uk

Randall Centre for Cell and Molecular Biophysics

Muscle Signalling Section

Faculty of Life Sciences and Medicine (FoLSM)

King’s College London

 


 

Heinz Jungbluth, MD, PhD, MRCP, MRCPCH

Telephone (Wanda, Secretary): +0044 20 71883998

Email: Heinz.Jungbluth@gstt.nhs.uk

Children’s Neuroscience Centre

Evelina London Children’s Hospital

Guy’s & St Thomas’ NHS Foundation Trust

Floor 02 – Becket House

Lambeth Palace Road

London

Francesco Muntoni, FRCPCH, FMedSci

Telephone: +44 20 7905 2111
Email: f.muntoni@ucl.ac.uk
Email Assistant: ich.dn.admin@ucl.ac.uk

Head, Developmental Neuroscience Programme

Dubowitz Neuromuscular Centre and MRC Centre for Neuromuscular Diseases

UCL Institute of Child Health & Great Ormond Street Hospital for Children (GOSH)

39 Guilford Street

London WC1N 1EH

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