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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.


Turner - Know Your Body - A Digital Information Book on Turner Syndrome edited by Claus. H. Gravholt

Turner Growth Chart

NIH Clinical Care Guidelines for Turner Syndrome - 2007

Strategies to Prevent Delayed Diagnosis in Turner Syndrome by Chayim Y. Newmark, MD


RESOURCES

Patient
Physician
Educator
Researcher
News
Media
Linked Sites
White Papers
Forums
Books, DVD's and more
Frequently Asked Questions
Contact Us


Patient

You may find the following resources about Turner syndrome helpful. These materials are written for the general public.

MedlinePlus - Health information
GARD - Genetic and Rare Diseaese Information
NIH - National Institutes of Health Eunice Kennedy Shriver
 


Provider

You may also be interested in these resources, which are designed for healthcare professionals and researchers.

ClinicalTrials.gov - Linking patients to medical research
PubMed - Recent literature
 


Educator

ADHD
NonVerbal Learning Disability

 


Researcher

• Center for Interdisciplinary Brain Sciences Research
Coriell Institute
• Endocrine Disrupter Screening Program 

Eunice Kennedy Shriver National Institue of Child Health and Human Development
• Genetic and Rare Diseases Information Center
• J S Genetics
• National Human Genome Research Institute
The Endocrine Society
UNC School of Medicine

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News

Turner Syndrome in the news, see TS News


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Media

Announcements
Articles
Newsletter
Videos
Books



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Linked Sites

Disclaimer
TSF does not endorse, control, or take responsibility for the broad content of these linked sites. If you would like to add a site to this listing, please email info@tsfusa.org with your suggestion.

Aging Women
Cancer
Cardio Vascular Disease
Chronic/Autoimmune Disease
Clinical Research
Education
EmpowHER
Endocrinology
Fitness and Physical
General Support
Genetics
Hormone Reimbursement Assistance
Musculoskeletal Health
Neurology and Mental Health
Oral Health
Pharmaceutical
Psychology
Reproductive Health
Social Work
Urinary and Kidney
Women's Health Resources

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Aging Women

Alliance for Aging Research
North American Menopause Society

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Cardio and Vascular Disease

American College of Cardiology
American Heart Association
American Stroke Association
National Heart, Lung, and Blood Institute
National Stroke Association
WISEWOMAN
 CDC Campaign 
WomenHeart

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Education

Individuals with Disabilities Education Act 
Learning Disabilities Online 
National Association of School Psychologists 
National Association of Social Workers 
National Dissemination Center for Children with Disabilities
Stop Bullying 
U.S. Department of Education
Wright's Law


Endocrinology
 

 American Association of Clinical Endocrinologists
American Thyroid Association
• Endocrine Disrupter Screening Program
The Hormone Foundation

• Pediatric Endocrine Society 
Pediatric Endocrinology Nursing Society
Society for Reproductive Endocrinology and Infertility

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Musculoskeletal Health

American Academy of Orthopaedic Surgeons
Arthritis Foundation
Know My Bones
 Council 
National Institute of Arthritis and Musculoskeletal and Skin Diseases
NIH Osteoporosis & Related Bone Disease National Resource Center
National Osteoporosis Foundation

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Neurology and Mental Health

Alzheimer's Association
American Psychiatric Association
American Psychological Association
Anxiety Disorders Association of America
Center for Women's Mental Health
Epilepsy Foundation
National Alliance on Mental Illness
National Institute of Mental Health
National Mental Health Association
National Sleep Foundation

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Oral Health

American Dental Association
TMJ Association

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Professional Member Organization

• American Academy of Audiology
• American Academy of Dermatology
American Academy of Pediatrics 
American Medical Association
• American College of Obstetricians and Gynecologists
American Society of Plastic Surgeons
American Gastroenterological Association
NAPNAP
National Association of School Psychologists 
National Association of Social Workers 
Pediatric Endocrine Nursing Society
American Osteopathic Association

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Reproductive Health

American Society for Reproductive Medicine
Association of Reproductive Health Professionals
National Institute of Child Health and Human Development
Planned Parenthood Federation of America
Resolve: The National Infertility Association
Society for Reproductive Endocrinology and Infertility
International Society for the Study of Women's Sexual Health
• National Center for HIV, STD & TB Prevention, Centers for Disease Control
National Institute of Allergy and Infectious Diseases

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Urinary and Kidney

• American Urogynecologic Society
American Urological Association
Interstitial Cystitis Association
National Association for Continence
The Simon Foundation for Continence

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Cancer

American Cancer Society

Breast Cancer

Breastcancer.org
Life ABC (Life After early Breast Cancer)
Living Beyond Breast Cancer
Public Health Degree
Susan G. Komen Breast Cancer Foundation

Gynecologic Cancer

Cervical Cancer Clearinghouse

Cervical Cancer-Free America (CCFA)
National Cervical Cancer Coalition
Partnership to End Cervical Cancer (PECC)
College of American Pathologists
Gynecologic Cancer Foundation
Johns Hopkins Ovarian Cancer Website
Ovarian Cancer National Alliance
Society of Gynecologic Oncology

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Chronic Illness
Autoimmune Diseases 

American Autoimmune Related Diseases Association, Inc.
American College of Rheumatologists
American Diabetes Association
Arthritis Foundation
Celiac Disease Foundation
Crohn's and Colitis Foundation of America
Lupus Foundation of America
Lymphatic Research Foundation
National Diabetes Education Program
National Institute of Arthritis and Musculoskeletal and Skin Diseases
National Institute of Diabetes & Digestive & Kidney Diseases
National Organization for Rare Disorders

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Fitness and Physical Therapy

American Physical Therapy Association
President's Council on Fitness, Sports & Nutrition
The Section On Women's Health of the American Physical Therapy Association
womenshealth.gov Physical Activity

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Pharmaceuticals

American Pharmaceutical Association
National Council on Patient Information and Education (NCPIE)
• Novo Nortis - Novo Med LinkPartnership for Prescription Assistance (PPA)
US Food and Drug Administration

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Hormone Reimbursement Assistance

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.

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Genetics
Genetics Home Reference
 U.S. National Library of Medicine

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Agencies/Resources
Community/Assistance/Support

American's Health Insurance Plans
Disabled Children Relief Fund 
Patient Services, Inc. (PSI)

AHRQ: Healthcare 411
American Medical Women's Association
CDC-Women's Health (Centers for Disease Control and Prevention)
Family Caregiving Resource
• Human Growth Foundation
MayoClinic.com 
• Magic Foundation
Medicare
MedlinePlus (National Library of Medicine, NIH)
Morgan's Wonderland - Accessible Entertainment
National Center for Family/Professional Partnerships
• National Institute of Health
National Library of Medicine's Health Services/Technology Assessment
Pub Med
• Social Security 
State Children’s Health Insurance Program (SCHIP)
The Arc

Education

Individuals with Disabilities Education Act 
Learning Disabilities Online
LD Online
National Association of School Psychologists 
National Association of Social Workers 
Stop Bullying 
U.S. Department of Education
Wright's Law 

 

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White Papers

White papers that are relevant to Turner Syndrome have been placed in the TS Journal, a collection of papers useful for learning more about TS. TS Journal


Forums





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