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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.

Strensiq Medical Alert Card

Download our Medical Alert Card

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.

INDICATION & IMPORTANT SAFETY INFORMATION


INDICATION
What is STRENSIQ?

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

IMPORTANT SAFETY INFORMATION
What are the possible side effects of STRENSIQ?
STRENSIQ may cause serious side effects, including
  • Serious allergic (hypersensitivity) reactions happened in some people who use STRENSIQ. Stop using STRENSIQ and go to the nearest hospital emergency room right away if you or your loved one 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) has happened several months after using STRENSIQ.
  • Calcium buildup in the eyes and kidneys can occur if you or your loved one have HPP. Your healthcare provider should check the eyes and kidneys while you or your loved one use STRENSIQ.
  • Decreased efficacy. Contact your healthcare provider if you or your loved one notice STRENSIQ is no longer working or experience worsening symptoms of HPP (e.g., increased respiratory support, increased difficulty walking, new fractures).
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.

Strensiq may affect other lab test results, therefore it is important that you present your Medical Alert Card to your healthcare team so they are aware that you are being treated with an alkaline phosphatase (ALP) replacement therapy which may cause incorrect results on certain laboratory tests.

 Tell your doctor if you are pregnant or plan to become pregnant, or are breastfeeding or plan to breastfeed.

These are not all 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.

Please see STRENSIQ full Prescribing Information, including Patient Information and Instructions for Use.

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