> > Patient Advocacy Groups

Finding community.

Advocacy groups raise awareness and provide support to patients and caregivers.

You may not know anyone else with a growth-related disorder, but you're not alone. There are other families going through the same thing. Patient advocacy groups help to create community, provide resources and education, and help raise awareness of disorders. Check out these growth related patient groups.

> > Patient Advocacy Groups

Finding community.

Advocacy groups raise awareness and provide support to patients and caregivers.

You may not know anyone else with a growth-related disorder, but you're not alone. There are other families going through the same thing. Patient advocacy groups help to create community, provide resources and education, and help raise awareness of disorders. Check out these growth related patient groups.

Human Growth Foundation

Five families of children with growth disorders founded the Human Growth Foundation in 1965; it now provides education, outreach, and support to families, medical professionals, and the public.

www.hgfound.org

The MAGIC Foundation

Major Aspects of Growth in Children, or MAGIC, is a support organization founded by parents for parents. The organization provides support, education, and ongoing communication to parents and affected adults. Their motto: “Children have a short time to grow and a lifetime to live with the results.”

www.magicfoundation.org

Noonan Syndrome Foundation

The mission of the Noonan Syndrome Foundation is to find lifesaving and effective medical treatments for people with Noonan syndrome; to raise awareness; and to build community through social media and an online support group.

www.teamnoonan.org

Pituitary Network Association

Originally a patient communication and support network, the Pituitary Network Association is the world’s largest patient advocacy group devoted to the treatment and care of pituitary disorders. It promotes awareness and works with the medical community to develop uniform standards.

www.pituitary.org

Prader-Willi Syndrome Association

Prader-Willi Syndrome Association (USA) was founded in 1975 to provide support to individuals and families, and resources for those seeking information about PWS. The organization strives to raise awareness, nurture a sense of hope and connection, advocate for research, and enhance the quality of life of those affected by Prader-Willi syndrome.

www.pwsausa.org

Turner Syndrome Foundation

The Turner Syndrome Foundation was created in 1987 by a group of women in Chicago for the purpose of networking and support. It creates awareness, promotes research, and provides support for all persons touched by Turner syndrome.

www.turnersyndromefoundation.org

Turner Syndrome Society

The Turner Syndrome Society of the United States provides resources to patients, families, and health care providers regarding Turner syndrome. It has chapters across the country and hosts an annual meeting.

turnersyndrome.org

Learn about the different conditions that Norditropin® is used to treat.

Childhood Growth Hormone Deficiency

Small for Gestational Age

Noonan Syndrome

Turner Syndrome

Adult Growth Hormone Deficiency

Prader-Willi Syndrome

Idiopathic Short Stature

Selected Important Safety Information

Do not use Norditropin® if: you have a critical illness caused by certain types of heart or stomach surgery, trauma or breathing (respiratory) problems; you are a child with Prader-Willi syndrome who is severely obese or has breathing problems including sleep apnea; you have cancer or other tumors; you are allergic to somatropin or any of the ingredients in Norditropin®; your healthcare provider tells you that you have certain types of eye problems caused by diabetes (diabetic retinopathy); you are a child with closed bone growth plates (epiphyses).

Indications and Usage

What is Norditropin® (somatropin) injection?
 
Norditropin® is a prescription medicine that contains human growth hormone and is used to treat:
  • children who are not growing because of low or no growth hormone 
  • children who are short (in stature) and who have Noonan syndrome, Turner syndrome, or were born small (small for gestational age-SGA) and have not caught-up in growth by age 2 to 4 years 
  • children who have Idiopathic Short Stature (ISS) 
  • children who are not growing who have Prader-Willi syndrome (PWS) 
  • adults who do not make enough growth hormone

Important Safety Information (cont’d)

Before taking Norditropin®, tell your healthcare provider about all of your medical conditions, including if you:

  • have had heart or stomach surgery, trauma or serious breathing (respiratory problems) 
  • have had a history of problems breathing while you sleep (sleep apnea) 
  • have or have had cancer or any tumor 
  • have diabetes 
  • are pregnant or breastfeeding, or plan to become pregnant or breastfeed

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Norditropin® may affect how other medicines work, and other medicines may affect how Norditropin® works.

How should I use Norditropin®?

  • Use Norditropin® exactly as your health care provider tells you to 
  • Do not share your Norditropin® pens and needles with another person even if the needle has been changed. You may give another person an infection or get an infection from them.

What are the possible side effects of Norditropin®?
Norditropin® may cause serious side effects, including:

  • high risk of death in people who have critical illnesses because of heart or stomach surgery, trauma or serious breathing (respiratory) problems 
  • high risk of sudden death in children with Prader-Willi syndrome who are severely obese or have breathing problems including sleep apnea 
  • increased risk of growth of cancer or a tumor that is already present and increased risk of the return of cancer or a tumor in people who were treated with radiation to the brain or head as children and who developed low growth hormone problems. Contact the healthcare provider if you or your child start to have headaches, or have changes in behavior, changes in vision, or changes in moles, birthmarks, or the color of your skin 
  • new or worsening high blood sugar (hyperglycemia) or diabetes 
  • increase in pressure in the skull (intracranial hypertension). If you or your child has headaches, eye problems, nausea or vomiting, contact the healthcare provider 
  • serious allergic reactions. Get medical help right away if you or your child has the following symptoms: swelling of your face, lips, mouth or tongue, trouble breathing, wheezing, severe itching, skin rashes, redness or swelling, dizziness or fainting, fast heartbeat or pounding in your chest, or sweating 
  • your body holding too much fluid (fluid retention) such as swelling in the hands and feet, pain in your joints or muscles or nerve problems that cause pain, burning, or tingling in the hands, arms, legs and feet. Tell your healthcare provider if you have any of these signs or symptoms of fluid retention. 
  • decrease in a hormone called cortisol. Tell your or your child’s healthcare provider if you or your child has darkening of the skin, severe fatigue, dizziness, weakness or weight loss 
  • decrease in thyroid hormone levels 
  • hip and knee pain or a limp in children (slipped capital femoral epiphysis) 
  • worsening of pre-existing curvature of the spine (scoliosis) 
  • severe and constant abdominal pain can be a sign of pancreatitis. Tell your or your child’s healthcare provider if you or your child has any new abdominal pain. 
  • loss of fat and tissue weakness in the area of skin you inject 
  • increase in phosphorus, alkaline phosphatase, and parathyroid hormone levels in your blood

The most common side effects of Norditropin® include:

  • injection site reactions and rashes, and headaches

Please click here for Norditropin® Prescribing Information.

Norditropin® is a prescription medication.

Novo Nordisk provides patient assistance for those who qualify. Please call 1-866-310-7549 to learn more about Novo Nordisk assistance programs.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800- FDA-1088.

Talk to your health care provider and find out if Norditropin® is right for you or your child.