Stay Connected

Resources for people affected
by hypophosphatasia

There has never been an approved therapy to treat patients with perinatal/infantile- and juvenile-onset hypophosphatasia —until now.

Step-by-step Strensiq® injection instructions.

Download our step-by-step injection instructions.

Advocacy groups

Having information about hypophosphatasia is important. Get to know the groups and organizations that are dedicated to hypophosphatasia and other rare diseases.

Softbones.org

The US Hypophosphatasia Foundation and Soft Bones Canada provide information and a community to educate, empower, and connect people, families, and caregivers living with hypophosphatasia.

Rarediseases.org

The National Organization for Rare Disorders (NORD) provides education, advocacy, research, and patient services for people with rare diseases and other organizations that serve them.

Rarediseases.info.nih.gov

The Office of Rare Diseases Research (ORDR) is a part of the National Institutes of Health (NIH). This site provides information on hypophosphatasia as well as the opportunity to ask a specialist questions about your experiences with hypophosphatasia.

MAGICfoundation.org

The MAGIC Foundation provides support and education to families of children with growth disorders and affected adults with endocrine disorders.

Globalgenes.org

Global Genes builds awareness, educates the global community, and provides critical connections and resources that equip advocates to become activists for their disease.

Important Safety Information

What is Strensiq® (asfotase alfa)?

Strensiq is a prescription medicine used to treat people with perinatal/infantile- and juvenile-onset hypophosphatasia (HPP).

What are the possible side effects of Strensiq?

Strensiq may cause serious side effects, including

  • Serious allergic (hypersensitivity) reactions. Serious allergic reactions have happened in some people who use Strensiq. Stop using Strensiq and go to the nearest hospital emergency room right away if you have any of the signs and symptoms of a serious allergic reaction, including
     
    • Difficulty breathing
    • Swelling of your eyes, lips, or tongue
    • Hives
    • Feeling faint
    • Nausea or vomiting
    • Dizziness
    • Itching of your lips, tongue, or throat
    • Choking sensation
     
  • Skin thickening or pits at the injection site (lipodystrophy). Lipodystrophy at the injection site has happened several months after using Strensiq
  • Calcium buildup in your eyes and kidneys. Your healthcare provider should check your eyes and kidneys while you use Strensiq
The most common side effects of Strensiq include local skin injection-site reactions (including red skin patches, bruising, color change, pain, itching, thinning, swelling, pits, and bumps) and calcium buildup in your eyes and kidneys. These are not all of the possible side effects of Strensiq. For more information, ask your healthcare provider or pharmacist. Call your healthcare provider for medical advice about side effects. You may report side effects to the US Food and Drug Administration at 1-800-FDA-1088.

SUPPORT IS JUST A CALL AWAY.

OneSource can provide personalized support every step of the way. Call 1-888-765-4747 to enroll today!