My ONeSource™ experience
OneSource™ was recommended to me by an advocacy organization when I initially thought I might have HPP. After reaching out to OneSource™, I was paired with a OneSource™ Case Manager. She was there to help me.”
Ray, HPP STAR
RAY, HPP STAR
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.
HPP Support from Alexion
HPP EDUCATIONAL Events
Register for an upcoming event
Strensiq Specialty pharmacy support
STRENSIQ is 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.
Read PANTHERx’s Welcome Letter to learn more.
Strensiq Treatment Support
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
HPP 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, Inc., The US Hypophosphatasia Foundation provides information and a community to educate, empower, and connect people, families, and caregivers living with HPP.
VISIT WEBSITE
The Avalon Foundation provides emotional and mental support to pediatric patients diagnosed with HPP and undergoing enzyme replacement therapy treatment.
VISIT WEBSITE
Global Genes builds awareness, educates the global community, and provides critical connections and resources that equip advocates to become activists for their disease.
VISIT WEBSITE
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 WEBSITEThe groups listed above are independent, nonprofit patient service organizations. Their listing on this website does not imply endorsement of any product or company. All logos and trademarks are the property of their respective owners.
What is the most important information I should know about STRENSIQ® (asfotase alfa)?
STRENSIQ may cause serious side effects, including severe allergic (hypersensitivity) reactions. Allergic reactions are common with STRENSIQ treatment and can be severe and life-threatening. Severe allergic reactions have happened in some people within minutes after receiving STRENSIQ and more than 1 year after starting treatment with STRENSIQ. Stop using STRENSIQ and go to the nearest hospital emergency room right away if you or your loved one get any of the following signs and symptoms of a serious allergic reaction:
- difficulty breathing
- choking sensation
- swelling of your eyes, lips, or tongue
- dizziness
- nausea or vomiting
- fever
- headache
- sweating
- feeling irritable
- chills
- skin redness
- skin rash or hives
-
itching or numbness of the
tongue, lips, cheeks, or gums
What are the other possible side effects of STRENSIQ?
STRENSIQ may cause other serious side effects, including:
- skin thickening or pits at the injection site (lipodystrophy). Lipodystrophy is common and has happened after several months in people treated with STRENSIQ.
- calcium build-up in the eyes and kidneys. People with HPP are at increased risk for developing calcium build-up in the body. Calcium build-up in the eyes and kidneys has happened and is a common side effect of STRENSIQ. Calcium build-up in the eyes and kidneys may also happen in people with HPP who are not treated with STRENSIQ. Your healthcare provider should check your eyes and kidneys before and during treatment with STRENSIQ.
- immune-related effects. You may develop antibodies during treatment that may decrease how well STRENSIQ works. Tell your healthcare provider right away if you get worsening symptoms of HPP including: difficulty breathing, difficulty walking, feeling tired, bone pain, stiff joints, or loss of appetite.
The most common side effects of STRENSIQ include local skin injection site reactions such as skin redness, bruising, color change, pain, itching, hardening of the skin (induration), swelling, and bumps. 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 will begin receiving STRENSIQ under the supervision of a healthcare provider. Tell your healthcare provider about all your medical conditions, including if
you:
- have had an allergic reaction to STRENSIQ.
- are pregnant or plan to become pregnant. It is not known if STRENSIQ will harm your unborn baby.
- are breastfeeding or plan to breastfeed. It is not known if STRENSIQ passes into your breast milk. Talk to your healthcare provider about the best way to feed your baby if you use STRENSIQ.
Tell your healthcare provider about all the
medicines you
take,
including
prescription and over-the-counter medicines,
vitamins, and herbal
supplements.
There is a registry for people who use STRENSIQ. The purpose of this registry is to collect information about HPP and about what happens when you use STRENSIQ for a long time. For more information about this registry, talk with your healthcare provider or go to www.hppregistry.com.
To report SUSPECTED SIDE EFFECTS, contact Alexion
Pharmaceuticals, Inc. at
1-844-259-6783 or FDA at
1-800-FDA-1088
or
www.fda.gov/
medwatch.
INDICATION
What is STRENSIQ?
STRENSIQ® (asfotase alfa) is a prescription medicine
used to
treat people
with perinatal, infantile, and juvenile onset
hypophosphatasia (HPP).
Please see the full Prescribing Information and Patient Information, including Boxed WARNING regarding severe allergic (hypersensitivity) reaction.
What is the most important information I should know about STRENSIQ® (asfotase alfa)?
STRENSIQ may cause serious side effects, including severe allergic (hypersensitivity) reactions. Allergic reactions are common with STRENSIQ treatment and can be severe and life-threatening. Severe allergic reactions have happened in some people within minutes after receiving STRENSIQ and more than 1 year after starting treatment with STRENSIQ. Stop using STRENSIQ and go to the nearest hospital emergency room right away if you or your loved one get any of the following signs and symptoms of a serious allergic reaction:
- difficulty breathing
- choking sensation
- swelling of your eyes, lips, or tongue
- dizziness
- nausea or vomiting
- fever
- headache
- sweating
- feeling irritable
- chills
- skin redness
- skin rash or hives
-
itching or numbness of the
tongue, lips, cheeks, or gums
What are the other possible side effects of STRENSIQ?
STRENSIQ may cause other serious side effects, including:
- skin thickening or pits at the injection site (lipodystrophy). Lipodystrophy is common and has happened after several months in people treated with STRENSIQ.
- calcium build-up in the eyes and kidneys. People with HPP are at increased risk for developing calcium build-up in the body. Calcium build-up in the eyes and kidneys has happened and is a common side effect of STRENSIQ. Calcium build-up in the eyes and kidneys may also happen in people with HPP who are not treated with STRENSIQ. Your healthcare provider should check your eyes and kidneys before and during treatment with STRENSIQ.
- immune-related effects. You may develop antibodies during treatment that may decrease how well STRENSIQ works. Tell your healthcare provider right away if you get worsening symptoms of HPP including: difficulty breathing, difficulty walking, feeling tired, bone pain, stiff joints, or loss of appetite.
The most common side effects of STRENSIQ include local skin injection site reactions such as skin redness, bruising, color change, pain, itching, hardening of the skin (induration), swelling, and bumps. 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 will begin receiving STRENSIQ under the supervision of a healthcare provider. Tell your healthcare provider about all your medical conditions, including if
you:
- have had an allergic reaction to STRENSIQ.
- are pregnant or plan to become pregnant. It is not known if STRENSIQ will harm your unborn baby.
- are breastfeeding or plan to breastfeed. It is not known if STRENSIQ passes into your breast milk. Talk to your healthcare provider about the best way to feed your baby if you use STRENSIQ.
Tell your healthcare provider about all the
medicines you
take,
including
prescription and over-the-counter medicines,
vitamins, and herbal
supplements.
There is a registry for people who use STRENSIQ. The purpose of this registry is to collect information about HPP and about what happens when you use STRENSIQ for a long time. For more information about this registry, talk with your healthcare provider or go to www.hppregistry.com.
To report SUSPECTED SIDE EFFECTS, contact Alexion
Pharmaceuticals, Inc. at
1-844-259-6783 or FDA at
1-800-FDA-1088
or
www.fda.gov/
medwatch.
INDICATION
What is STRENSIQ?
STRENSIQ® (asfotase alfa) is a prescription medicine
used to
treat people
with perinatal, infantile, and juvenile onset
hypophosphatasia (HPP).
Please see the full Prescribing Information and Patient Information, including Boxed WARNING regarding severe allergic (hypersensitivity) reaction.