RESOURCES FOR PEOPLE LIVING WITH HPP

While living with hypophosphatasia (HPP) may be challenging, there is a community of support waiting to help. Discover the many support options available to patients and their loved ones.

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SUPPORT FROM ALEXION

STRENSIQ patient brochure thumbnail
STRENSIQ brochure
Read a complete guide about STRENSIQ® (asfotase alfa).
Download brochure
Unmask HPP logo
Unmask HPP
Meet others who are also affected by HPP.
Sign up for an event
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Peer Connects
Speak with someone who takes STRENSIQ.
Download info card
HPP STARS logo
HPP STARS
Become an HPP STAR and share your story.
Download info card
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Online community
Join the online community of people living with HPP and stay up-to-date with information from Alexion.
VISIT FACEBOOK

From being prescribed STRENSIQ to starting and staying on STRENSIQ, OneSource™ and PANTHERx Rare® are here to help

OneSource and PANTHERx Rare work together to get STRENSIQ to you or someone you care for. While OneSource will be your first point of contact as you make STRENSIQ part of your routine, PANTHERx Rare handles the prescription logistics and may contact you throughout treatment.

Journey from prescription to treatment with STRENSIQ graphic
Journey from prescription to treatment with STRENSIQ graphic

Patient support

OneSource™ is a complimentary, personalized patient support program offered by Alexion

When you enroll in the OneSource program, you’ll work with a dedicated team of OneSource Case Managers with expertise in rare conditions and health insurance.

Health insurance navigation

Health insurance navigation

Disease information

Disease information

Ongoing support

Ongoing support

Community connections

Community connections

DOWNLOAD BROCHURE

Specialty pharmacy

STRENSIQ is only available from a specialty pharmacy called PANTHERx Rare

Your doctor will prescribe STRENSIQ through PANTHERx Rare. This specialty pharmacy handles prescription logistics, including shipment and ongoing refills.

Group of patients and caregivers

PATIENT ADVOCACY ORGANIZATIONS

When living with a rare disease, connecting with others is important. Get to know the groups and organizations that are dedicated to HPP and other rare diseases.

Soft Bones logo

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

Visit Soft Bones
The MAGIC Foundation logo

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

Visit The MAGIC Foundation
The Avalon Foundation logo

The Avalon Foundation provides emotional and mental support to pediatric patients diagnosed with HPP and undergoing enzyme replacement therapy treatment.

Visit The Avalon Foundation
Global Genes logo

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

Visit Global Genes
The National Organization for Rare Disorders (NORD) logo

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.

Visit NORD
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IMPORTANT SAFETY INFORMATION & INDICATION

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 (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.

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

Please see STRENSIQ full Prescribing Information, including Patient Information and Instructions for Use.
IMPORTANT SAFETY INFORMATION & INDICATION

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 (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.

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

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