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Patient Resources

The Turner Syndrome Foundation, Inc. website(s) is designed for educational purposes only and is not intended to serve as medical advice. The information provided on this site should not be used for diagnosing or treating a health problem or disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care professional.


QUICK LINKS:
Advocacy
Books
Estrogen (HRT) Reimbursement Assistance
Growth Hormone Reimbursement Assistance
Specialized Care at Turner Syndrome Centers
Insurance Coverage
Travel Assistance
State Resources


Estrogen (HRT) Reimbursement Assistance

Novartis
For questions, please call Novartis at 1-800-277-2254
Novartis Foundation has designed a number of assistance programs and offers reimbursement hotlines for patients without prescription drug coverage or experiencing financial hardship.
Novartis also supports the Partnership for Prescription Assistance, a single point of access to more than 475 public and private patient assistance programs in the US, including more than 180 programs offered by healthcare companies.
Fore more information go to: http://www.novartis.com/corporate-responsibility/access-to-healthcare/patient-assistance-programs.shtml


Novo Nordisk
Program Name: Novo Nordisk Patient Assistance Program
Hormone Therapy
Activella® 0.5 mg/0.1 mg or Vagifem®
For questions, please call Novo Nordisk at 1-866-310-7549
The Novo Nordisk Hormone Therapy Patient Assistance Program provides free medicine in five months supply to those who need it for as long as they qualify.
For more information go to: http://www.novonordisk-us.com/


Growth Hormone Reimbursement Assistance
Quick links:
Sandoz
Pfizer
Novo Nordisk
Genentech
EMD Serono
Eli Lilly
Partnership for Prescription Assistance (PPA)

Sandoz
Program Name: OmniSource™
Description: Comprehensive support program designed to make patient’s treatment experience with Omnitrope® as smooth and simple as possible. OmniSource is able to provide answers and support at any point in treatment. OmniSource works directly with patients and their healthcare provider to assess patient eligibility regarding interim care product in the Sandoz OmniStart Program (SOS), insurance coverage, patient assistance program (PAP), and our copay assistance programs.
Website: www.omnitrope.com
Phone #:  1-877-456-6794

Pfizer
Program Name: Pfizer Bridge Program
Description: Helps families get information about GENOTROPIN and aids with the reimbursement process
Address: 235 East 42nd Street New York, NY
Website: www.genotropin.com
Phone #: 1-800-645-1280

Novo Nordisk
Program Name: Norditropin Patient Assistance Program (PAP)
Description: The Norditropin Patient Assistance Programs (PAP) helps those who do not have private health insurance or do not qualify for private, local, state, or federal prescription
Address:  100 College Road West Princeton, NJ 08540
Website: www.novonordisk-us.com
Phone #:  1-888-NOVO-444 

Genentech
Program Name:  Co Pay Assistance Program
Description:  After meeting financial criteria patient will be approved for co pay assistance
Program Name:  Genentech Access to Care Foundation
Description:  For patients who have no insurance or whose prior authorization has expired
Program Name:  Independent Non-Profit Assistance
Description:  For patients who are receiving Medicaid or Medicare
Program Name:  NuAccess
Description: For pediatric patients who need to get started with medication during the authorization process
Address:  P.O. Box 220039 Charlotte NC  28222
Website:  www.gene.com and www.nutropin.com
Phone:  1-866-688-7674

EMD Serono
Program Name:  Saizen Patient Assistance Program
Description:  Financial assistance for uninsured patients
Program Name:  Saizen Co-Pay Assistance
Description:  After meeting financial criteria patients will be assisted with co-pay bills
Address:  Connections for Growth 4343 North Scottsdale Road Scottsdale, AZ 85251
Website: www.emdserono.com and www.saizenus.com
Phone #: 1-800-582-7989

Eli Lilly
Program Name:  Lilly Access Program
Description:  After meeting financial criteria patients who qualify can receive up to 1 year of free medication
Address:  PO Box 9155 Gaithersburg MD  20898
Website:  www.lillytruassist.com and www.humatrope.com
Phone #: 1-800-642-2340

Partnership for Prescription Assistance (PPA)
www.pparx.org
1-888-4PPA-NOW
Helps qualifying patients without prescription drug coverage get the medicines they need for free or nearly free.
They offer a single point of access to more than 475 public and private programs, including nearly 200 offered by pharmaceutical companies. We have already helped millions of Americans get free or reduced-cost prescription medicines.

Assistance for other therapies:
Directory of PhRMA Member Company Patient Assistance Programs

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Specialized Centers for the Care of Turner Syndrome
 
Print list of specialized centers



Alaska
Providence Alaska Medical Center

3340 Providence Drive, Suite A - 351
Anchorage, AK 99508
Tel# 907-212-4824  Fax 907-212-4831
Contact: Dr. Cydney Fenton
Website: http://Alaska.Providence.org/

California
Lucile Package Children’s Hospital Stanford
725 Welch Rd, Palo Alto, CA 94304
Tel# 650-723-5791
Contact: Ofelia Colin
Website: http://www.stanfordchildrens.org/
 
Children's Hospital Los Angeles
4650 Sunset Blvd, Mailstop #61
Los Angeles, CA 90027
Tel# 323-361-4606
Contact: Janet Guerrero
Website: http://www.chla.org/medical-management-well-known-genetic-disorders

Radys Children's Hospital, UC San Diego
7910 Frost Street, Ste. 200
San Diego, CA 92123
Contact: Karen Oerter Klein
Tel# 858- 966-5999
wWebsite: http://www.radyschildrenshospital.org

Colorado
Department of Endocrinology at Children’s Hospital Colorado
Anschutz Medical Campus 13123 East 16th Ave., Aurora, CO 80045  
Tel: 720-777-1234
Contact: Susan Howell
Website: http://www.childrenscolorado.org
 
Connecticut
Connecticut Children’s Medical Center

282 Washington Street, Hartford, CT 06106
Contact: Karen Rubin, MD
Tel: 860-545-9000
Website: http://www.connecticutchildrens.org

Florida
Turner Syndrome Center at the University of Florida

2000 SW Archer Road, Gainesville, FL 32608
Contact: Debbie McKeown, MD
Tel: 352-265-PEDS or 352-273-5625 Fax: 352-627-4415
Website: https://ufhealth.org
 
All Children’s Hospital

501 6th Avenue South, St. Petersburg, FL 33701
Tel: 727-898-7451 Toll-Free: 800-456-4543
Website: http://www.allkids.org
 
Georgia
Emory Children’s Center

2015 Upper Gate Drive NE, Atlanta, GA 30322
Contact: Aretha Samuels, Admin Assistant
Tel: 404-778-2400 Fax: 404-727-3423
Website: http://www.choa.org
 
Illinois
Lurie Children’s Hospital

225 E. Chicago Ave., Chicago, IL 60611​
Tel: 800-543-7362
Contacts: Lauren Robinson, RN Tel: 312-227-6495 or Eliz Capella Tel: 312-227-4641
Website: https://www.luriechildrens.org

Massachusetts
Turner Syndrome Clinic at Mass General Hospital for Children

Yawkey Center for Outpatient Care, Suite 6B, 32 Fruit Street, Boston, MA 02114
Contact:  Sheri Mangini, Service Coordinator , Pat Ryan, Ped Endo   Sylvia Curry, Repro Endo
Tel: 617-726-1561 Fax: 617-726-1566
Website: http://www.massgeneral.org

Michigan
C. S. Mott Children's Hospital
1540 E. Hospital Drive
Ann Arbor, MI 48109
Pediatric Endocrinology (732) 764-5175
Referral from primary care physician required
http://www.mottchildren.org/patient-visitor-guide
 
Missouri
Children’s Mercy on Broadway- Turner Syndrome Clinic

3101 Broadway Blvd, Kansas City, MO 64111
Contact: Kathy Williams
Tel: 816-960-8803 Toll free: 888-563-3070
Website: http://www.childrensmercy.org
 
Turner Syndrome Clinic at Cardinal Glennon Children’s Medical Center

1465 S. Grand Boulevard, St. Louis, MO 63104
Contact: Dr. Susan Myers, MD
Tel: 314-577-5648
Website: http://www.cardinalglennon.com
 
New Jersey
The Alfiero and Lucia Palestroni Birth Defects Center, St. Joseph’s Children’s Hospital Youth and Adult Care

11 Getty Avenue, Paterson, NJ 07503
Contact: Christina Flora, MSGC, CGC GENETICS, Coordinator / Counselor or Ashley-Lynn Amoruso, LSW
Tel: 973-754-2174
or 973-754-3222 Fax: 973.566.9467
Website: http://stjosephshealth.org
 
Rutgers-Robert Wood Johnson Medical School
Children’s Health Institute of New Jersey

89 French Street, Suite 2300, New Brunswick, NJ 08901
Contact: Ian Marshall, MD
Tel: 732-235-9378 or email: marshaia@rwjms.rutgers.edu
Website: http://umg.umdnj.edu
 
The Molly Center for Center for Children with Diabetes and Endocrine Disorders
Hackensack University Medical Center

30 Prospect Avenue, WFan Building, Hackensack, NJ 07601
Contact: Javier Aisenberg, MD or Amy Chartoff , APN
Tel: 551-996-5329
Website: http://www.hackensackumc.org
 
New York
Winthrop University Hospital

259 First Street, Mineola, NY 11501
Contact: Paul Saenger, MD
Tel: 516-663-2264
Website: http://www.winthrop.org
 
Children's Hospital at Montefiore
3415 Bainbridge Ave., Bronx, NY 10467
Contact: Rubina Heptulla, MD or Susan Wesoly, RPA-C
Tel: 718-920-4664
Website: http://cham.org

 
Weil Cornell Medical College

1300 York Avenue, New York, NY 10065
Tel: 212-746-1503 Fax: 212-746-8527
Contact: 
Website: http://www.weillcornellmedicine.com
 
North Carolina
UNC School of Medicine Turner Syndrome Clinic, UNC Department of Pediatrics

260 MacNider Building, CB# 7220, UNC School of Medicine, Chapel Hill, NC 27599
Contact: Jennifer Leonard
Tel: 919-966-1505 Fax: 919-966-7299
Website: http://pediatrics.med.unc.edu
 
Ohio
Cincinnati Children's Turner Syndrome Center

3333 Burnet Avenue, Cincinnati, Ohio 45229
Contact: Lori Casnellie, RN
Tel: 513-636-0226
Appointment: 513-636-4744, option 1
Website: http://www.cincinnatichildrens.org
 
Turner Syndrome Clinic
Nationwide Children's Hospital Outpatient Care Center

555 S. 18th Avenue, Columbus, OH 43205
Contact: Dr. David R. Respaske, MD
Tel: 614-722-4425
Website: http://www.nationwidechildrens.org
 
Turner Syndrome Center at Akron Children’s Hospital
Considine Professional Building
215 W. Bowery Street, Suite 6400, Akron, OH 44308
Contact: Dr. Cydney Fenton, MD or Kim Daroski, RN, Clinical Leader
Tel: 330-543-3276
Website: https://www.akronchildrens.org
 
Oklahoma
University of Oklahoma College of Medicine Turner Syndrome Clinic

1200 Children's Avenue, Suite 4D, Oklahoma City, OK 73104
Contact:  Traci Schaeffer, RN
Tel: 405-271-6764 Fax: 405-271-3093
Website: http://www.oumedicine.com
 
Oregon
Doernbecher Children’s Hospital Endocrinology Clinic

Physicians Pavilion, 1st Schnitzer Diabetes Health Center
3181 SW Sam Jackson Park Road, Portland, OR  97239
Contact: Candi Hepper, RN
Tel: 503-494-3273
Website: http://www.ohsu.edu
 
Pennsylvania
T
urner Syndrome Program at Children's Hospital of Philadelphia
34th Street and Civic Center Boulevard, Philadelphia, PA 19104
Contact:  Denise Gruccio, MSN, CRNP
Tel: 215-590-3174
Website:  http://www.chop.edu
 
Children’s Hospital of Pittsburgh
One Children's Hospital Drive, 4401 Penn Ave., Pittsburgh, PA 15224
Contact: Tammy Nenadovich, Endocrinology
Tel: 412-692-5325
Website: http://www.chp.edu
 
Thomas Jefferson University Kimmel School of Medicine
833 Chestnut Street, Suite 1210, Philadelphia, PA 19107
Contact: Judith L. Ross, MD or Karen Kowal
Tel: 215-955-6520  Fax: 215-860-0408
Website: http://www.jefferson.edu

Lehigh Valley Hospital
1200 Cedar Crest Blvd., Allentown, PA 18103
Tel: 610-402-8000
Website: https://www.lvhn.org/conditions_treatments/childrens_care/turner_syndrome/learn_about_turner_syndrome
 

South Carolina
University of South Carolina School of Medicine

Office Hours - 8:30 a.m. - 4:30 p.m.
Phone: (803) 434-7990
Fax: (803) 434-4669
9 Medical Park, Suite 230
Columbia, SC 29203

Tennessee
Monroe Carrell Jr. Children’s Hospital at Vanderbilt

2200 Children’s Way, Nashville, TN 37232
Tel: 615-322-7427
Website: https://www.childrenshospital.vanderbilt.org/index.php

Texas
The University of Texas Health Science Center at Houston
7000 Fannin, Suite 1200, Houston, Texas 77030
Tel: 713-500-4HSC or 713-500-4472                 
Website: https://www.uth.edu/

Virginia
Children’s Hospital of Richmond at VCU
Pembrooke Office Park, 2305 N Parham Rd, Ste 1, Henrico, VA 23229
Tel: 804-828-2467
Website: http://www.chrichmond.org/

Washington
University of Washington Medical Center Genetic Medicine Clinic Turner Syndrome Clinic
1705 North East Pacific Street, K253, Box 357720, Seattle, WA 98195
Contact: Virginia P. Sybert, MD
Tel: 206-598-4030 Fax: 206-598-3269
Website: http://depts.washington.edu/medgen/clinics.shtml

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Insurance Coverage

The high cost of insurance coverage is an area of great concern. Many insurance plans have high deductibles and high out of pocket maximums, which have to be met before  the cost of services are covered.  If you find that you are in this situation and are having difficulty paying the deductibles, there are a number of resources available that provide assistance.
  1. Contact American Hope Resources.
  2. Contact your State Department of Insurance and ask about consumer assistance programs and patient advocacy groups. There are national organizations such as the Healthwell Foundation, which offer patient assistance.
  3. Ask your physician if he/she is familiar with any organizations or charities in your area which offer assistance.
  4. Bio pharmaceutical companies provide free or discounted medications. The drug company may have a prescription co-pay plan to reduce monthly out-of- pocket expenses. Growth Hormone Reimbursement Assistance Programs
  5. Many insurance companies offer a three month supply of medications at a reduced rate, if you order by mail.
  6. Ask your physician if any of the drug reps servicing the office can obtain medications for you at a reduced rate.
  7. Each state has its own medicaid program. Many states offer insurance through a medicaid HMO and eligibility is based upon income. Check with the medicaid office in your state to see if you qualify. Access insurance coverage through the Health Insurance Marketplace.
  8. If you are age 26 or younger you have the option of remaining on your parent's health insurance.
Health Coverage Plans:
United Healthcare Community Plan - Member services: 1-800-941-4647 or www.uhccommunityplan.com
Amerigroup - Member services: 1-800-600-4441 or www.amerigroupcorp.com
Children's Health Insurance Plan (CHIP) Member services: 1-877-Kids-Now (1-877-573-7669) or 1-800-701-0170 or www.insurekidsnow.gov

Dental Coverage Plans:
DentaQuest (Dental Vendor for Healthfirst) - Member services: 1-800-436-5298 or www.dentaquest.com
Healthplex (Dental Vendor for Amerigroup) - Member services: 1-888-468-2183 or www.healthplex.com

Patient Assistance:
Patient Assistance Network - Patients or their advocates can call: 1-866-316-7623 or www.panfoundation.org
Catastrophic Illness Fund (NJ Residents) www.nj.gov/humanservices/cicrf/home/index.html

Centers for Medicare and Medicaid
Health Insurance Marketplace CMS.gov

State Health Insurance Counselors (SHIP) 1-877-839-2675 https://www.shiptacenter.org
Ask about the Advanced Premium Tax Credit subsidy that helps to lower premiums  

Medicare Rights Flyer - https://www.shiptacenter.org/media/1287/programsthathelpwithmedicarecosts.pdf​

Is my test, item or service covered? https://www.medicare.gov/coverage/your-medicare-coverage.html?q=mri

Hearing Aid Assistance:
http://sertoma.org/ways-to-help/hearing-aid-resources/

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Travel Assistance 

www.corpangelnetwork.org
Corporate Angel Network arranges free travel on corporate jets for cancer patients, bone marrow donors and bone marrow recipients

www.patienttravel.org
The purpose of the National Patient Travel Center is to ensure that no financially needed patient is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of a means of long-distance medical transportation.

www.palservices.org
PALS provides air transportation for patients who are receiving diagnosis, medical treatment or follow-up for acute or chronic healthcare conditions and cannot afford commercial or charter flights.

www.aircareall.org
Central listing for free air travel services. Free air transportation for medical treatment for people with financial need. 

 


For more information and other linked sites, visit RESOURCES

Do you know of helpful resources for patients?  If so, let us know about them.  Email: info@tsfusa.org