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Privacy Policy and Notice of Information Practices

Effective Date: February 5, 2016

BioMarin Pharmaceutical Inc. ("BioMarin") respects the privacy of visitors to its websites and online services and values the confidence of its customers, partners, patients, and employees.

This Privacy Policy and Notice of Information Practices (“Privacy Notice”) sets forth BioMarin's practices regarding the collection, use, and disclosure of information that you may provide through the websites and online services that we operate and that link to this Privacy Notice (collectively, the “Services”). This Privacy Notice applies only to the Services and does not apply to information that we collect offline.  Please read the entire Privacy Notice before using our Services.  By using the Services, you agree to abide by the terms of this Privacy Notice.  

Collection of Information

We may ask you for some or all of the following types of information when you register with our Services, access various content or features, submit photos and other content, or directly contact us with questions or feedback:

  • Contact information, such as name, e-mail address, postal address, and telephone number;
  • User name and password;
  • Demographic information, such as age information and gender;
  • Communications preferences;
  • Search queries;
  • Stories, comments, photos, and other information posted in our interactive online features; and
  • Correspondence and other information that you send to us.

We also may collect certain information automatically when you visit the Services, including:

  • Your browser type and operating system;
  • Your Internet Protocol (IP) address, which is the number automatically assigned to your computer whenever you access the Internet and that can sometimes be used to derive your general geographic area;
  • Other unique identifiers, including mobile device identification numbers;
  • Sites you visited before and after visiting the Services;
  • Pages you view and links you click on within the Services;
  • Information collected through cookies, web beacons, and other technologies;
  • Information about your interactions with e-mail messages, such as the links clicked on and whether the messages were opened or forwarded; and
  • Standard server log information.

We may use cookies, pixel tags, and similar technologies to automatically collect this information.  Cookies are small bits of information that are stored by your computer’s web browser.  Pixel tags are very small images or small pieces of data embedded in images, also known as "web beacons" or "clear GIFs,” that can recognize cookies, the time and date a page is viewed, a description of the page where the pixel tag is placed, and similar information from your computer or device.  By using the Services, you consent to our use of cookies and similar technologies.  You can decide if and how your computer will accept a cookie by configuring your preferences or options in your browser. However, if you choose to reject cookies, you may not be able to use certain online products, services or features on the Services.

Use of Information

We may use information that we collect through the Services for a variety of purposes, including to:

  • Provide you with the products, promotions, services, and information you request;
  • Contact you via email and otherwise about products, services, and events that we think might be of interest to you;
  • Maintain or administer the Services, perform business analyses, or for other internal purposes to improve the quality of our business, the Services, and other products and services we offer;
  • Publish stories, comments, photos, and other information posted in our interactive online features;
  • Process employment applications and inquiries;
  • Customize and personalize your use of the Services; and
  • As otherwise described to you at the point of collection or pursuant to your consent.

Sharing of Information

We are committed to maintaining your trust, and we want you to understand when and with whom we may share the information we collect.  

  • Corporate Parents and Affiliates.  We may share your information with our corporate parents and other affiliated entities for a variety of purposes, including business, operational, and marketing purposes.
  • Service Providers.  We may share your information with service providers that perform certain functions or services on our behalf (such as to host the Services, manage databases, perform analyses, or send communications for us).
  • Other Parties When Required By Law or as Necessary to Protect the Services.  We may disclose your information to third parties in order to:  protect the legal rights, safety, and security of BioMarin, our corporate parents and affiliates, and the users of our Services; enforce our Terms of Use; prevent fraud (or for risk management purposes); and comply with or respond to law enforcement or legal process or a request for cooperation by a government entity, whether or not legally required.
  • In Connection With a Transfer of Assets. If we sell all or part of our business, or make a sale or transfer of assets, or are otherwise involved in a merger or business transfer, or in the event of bankruptcy, we may transfer your information to one or more third parties as part of that transaction.
  • Other Parties With Your Consent. We may share information about you with third parties when you consent to such sharing, including when you post information to a user profile or a public area of the Services, such as a chat room, forum, blog, or other community tool.
  • Aggregate Information.  We may disclose to third parties information that does not describe or identify individual users, such as aggregate website usage data or demographic reports. 

We may allow third parties to place and read their own cookies, web beacons, Local Shared Objects, and similar technologies to collect information through the Services.  For example, our third-party service providers may use these technologies to collect information that helps us with traffic measurement, research, and analytics.  Local Shared Objects (sometimes referred to as “Flash Cookies”) are similar to standard cookies except that they can be larger and are downloaded to a computer or mobile device by the Adobe Flash media player.  Please note that you may need to take additional steps beyond changing your browser settings to refuse or disable Local Shared Objects and similar technologies.  For example, Local Shared Objects can be controlled through the instructions on Adobe’s Setting Manager page.   If you choose to refuse, disable, or delete these technologies, some of the functionality of the Services may no longer be available to you.

Social Networking Services

BioMarin has worked with certain third-party social media providers to offer you their social networking services through our Services.  For example, you can use third-party social networking services, including but not limited to Facebook, Twitter, and others to share information about your experience on our Services with your friends and followers on those social networking services.  These social networking services may be able to collect information about you, including your activity on our Services.  These third-party social networking services also may notify your friends, both on our Services and on the social networking services themselves, that you are a user of our Services or about your use of our Services, in accordance with applicable law and their own privacy policies.  If you choose to access or make use of third-party social networking services, we may receive information about you that you have made available to those social networking services, including information about your contacts on those social networking services.

You also may be able to link an account from a social networking service (e.g., Facebook, Twitter) to an account through our Services.  This may allow you to use your credentials from the other site or service to sign in to certain features on our Services.  If you link your account from a third-party site or service, we may collect information from those third-party accounts, and any information that we collect will be governed by this Privacy Policy.


We maintain reasonable security procedures to help protect against loss, misuse or unauthorized access, disclosure, alteration or destruction of the information you provide through the Services.   However, no data transmission over the Internet or stored on a server can be guaranteed to be 100% secure.  As a result, while we strive to protect your information and privacy, we cannot guarantee or warrant the security of any information you disclose or transmit to us online and cannot be responsible for the theft, destruction, or inadvertent disclosure of your information.  In the event that we believe that the security of your information may have been compromised, we will endeavour to give you appropriate notice as quickly as possible, including by email.  You consent to our use of e-mail for such notification.

You are responsible for maintaining the confidentiality of your account password and for any access to or use of the Services using your password, whether or not authorized by you.  Please notify us immediately of any unauthorized use of your password or account or any other breach of security. 

Children’s Privacy

Visitors between the ages of 13 and 18 must obtain permission from their parent or guardian before registering on the Services, providing any information, or participating in online discussions.

BioMarin respects the privacy of children and we are committed to complying with the Children’s Online Privacy Protection Act (COPPA).  The Services do not knowingly collect, use, or disclose personal information from children under the age of 13 without prior parental consent, except as permitted by COPPA.  By providing your consent, you agree that we may collect, use, and disclose your child’s personal information consistent with this Privacy Notice. 

If you have questions concerning our information practices with respect to children, or if you would like to review, have deleted, or stop the further collection of your child’s personal information, you may email us at

Your Choices and Your Information

If at any time you wish to stop receiving emails or other communications from us, or if you have submitted information through the Services and would like to have that information deleted from our records, please notify us.

You may also request access to your information held by BioMarin and you may request that we correct or amend your personal data by contacting us by email at or by telephone at (415) 506-6700.

Users Outside the United States

By using the Services, you consent to the collection, storage, processing, and transfer of your information in and to the United States, or other countries and territories, pursuant to the laws of the United States. 

Links to Third-Party Content

As a convenience to our visitors, the Services may link to a number of sites, services, and other content that are operated and maintained by third parties.  These third parties operate independently from us, and we do not control their privacy practices. Such links do not constitute an endorsement by BioMarin of the content or the persons or entities associated therewith. This Privacy Notice does not apply to third-party content. We encourage you to review the privacy policies of any third-party to whom you provide information. 

Modifications to this Privacy Notice

We reserve the right to modify this Privacy Notice from time to time without prior notice. Such changes will be effective immediately upon posting to this Service.  Your continued use of the Services after any modification to the Privacy Notice will constitute your acceptance of the new terms and conditions. 

Contact Us

If you have any questions about this Privacy Notice, you may contact us at:

BioMarin Pharmaceutical Inc.
105 Digital Drive
Novato, CA 94949
Phone: (415) 506-6700

I live with Morqiuo A every day. How can I connect with my community? Take part in creating an online Morquio A community by telling us where you're from and sharing your personal stories. Click here to put yourself on the Map.
Bones? Heart? Lungs? How are they related? There is no treatment for the cause of Morquio A. The signs and symptoms that go along with this unpredictable disease may affect multiple organs and systems. Click here to learn more about Morquio A.

what is morquio a?

Morquio A is a rare inherited disease that affects major organ systems in the body. The disease is a form of mucopolysaccharidosis, which is a type of lysosomal storage disorder.

People born with Morquio A can't break down glycosaminoglycans (GAGs) molecules because their bodies don't make enough of an enzyme, or protein, called N-acetylgalactosamine-6 sulfatase (GALNS). This enzyme breaks down or recycles materials the body can't use. When the body doesn't produce enough of the enzyme, GAGs build up in tissues, bones, and major organs. GAGs cause serious problems, including heart disease, skeletal abnormalities, vision and hearing loss, difficulty breathing, and early death.

Even though Morquio A is serious, it's important to remember that the disease can affect people differently. With proper treatment, people with Morquio A can live a long time — in some cases, just as long as people who don't have Morquio A

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Morquio A is a recessive inherited disease. This means that both parents must have a defective gene in order for there to be a risk of passing Morquio A on to their children.

The genes we get from our parents determine most of our physical characteristics. Hair color, blood type, gender, and eye color are all examples of inherited characteristics. But some health problems can also be inherited.

  • In the case of Morquio A, the inherited genes can't make the enzymes, or proteins, that break down a certain type of cellular waste.
  • The waste is called keratan sulfate (KS), and it builds up in cells over time. KS is a type of glycosaminoglycan (GAG).
  • When CAGs build up in the body, the results can be severe. People with Morquio A have widespread, life-limiting physical problems and dangerous organ complications.

TIP/ Exercise

Ask your doctor about the different kinds of low-impact exercises you can start doing to keep yourself strong and healthy. These should be exercises you can safely do at home by yourself or with the help of a caregiver. For some people, aqua therapy brings a combination of movement and relaxation to the muscles that land based exercise can't always provide. See more tips.

Early Signs & Symptoms

The signs and symptoms of Morquio A are not usually obvious at birth. By the age of 2 or 3 years, enough KS has built up in the child's body to start causing problems.

The first noticeable symptoms that usually show are oddly shaped bones, knock knees, spine curvature, and irregular chest growth. As the child gets older, more serious symptoms will start to show up. In some cases, symptoms can show up in children as young as 6 months.


Morquio A is a progressive disease, meaning that it will get worse over time. According to the recently published “International Guidelines for the Management and Treatment of Morquio A Syndrome,” it's important to get an early diagnosis in order to prevent further damage, and to start treatment with an enzyme replacement therapy (ERT) right away. The chart below shows the two most common to tests to check for Morquio A.

For the test to screen for Morquio A, Doctors test urine to measure glycosaminoglycan (GAG) levels. People with Morquio A usually have high levels of keratan sulfate, a type of GAG, in their urine. For the test to diagnose Morquio A, Doctors use an enzyme test to measure levels of N-acetylgalactosamine-6 sulfatase (GALNS) in blood and skin cells. People with Morquio A have low amount of this enzyme.

Doctors also perform family testing for Morquio A. Testing is available for parents who already have a child with Morquio A to see if any future children will be at risk. In this prenatal test, fetal cells are collected and the GALNS enzyme is measured. People who have siblings with Morquio A may want to take a genetic test, especially when they are planning their own families. This test shows if they are a carrier of the nonworking gene.


VIMIZIM® (elosulfase alfa) is indicated for patients with Mucopolysaccharidosis type IVA (MPS IVA; Morquio A syndrome).

Important Safety Information

Life-threatening allergic reactions, known as anaphylaxis, can occur during VIMIZIM® (elosulfase alfa) infusions. Typical signs of anaphylaxis include cough, rash, throat tightness, hives, flushing, changes in skin color, low blood pressure, shortness of breath, chest pain, and gastrointestinal symptoms such as nausea, abdominal pain, retching, and vomiting. Contact your doctor or get medical help right away if these symptoms occur during or after VIMIZIM infusions. If you have a respiratory illness, you may be at risk for a sudden worsening of your condition, and you may require additional monitoring.

VIMIZIM is a prescription medicine. Before treatment with VIMIZIM, it is important to discuss your medical history with your doctor. Tell your doctor if you are sick or taking any medication and if you are allergic to any medicines. Also tell your doctor if you are pregnant, planning to become pregnant, or are a nursing mother. Your doctor will decide if VIMIZIM is right for you. If you have questions or would like more information about VIMIZIM, contact your doctor.

Anaphylaxis can occur during any VIMIZIM infusion and up to three hours after any infusion, and hypersensitivity reactions have been observed as early as 30 minutes from the start of infusion but as late as six days after infusion.

Serious and severe reactions can happen with VIMIZIM treatment, including life-threatening allergic reactions (anaphylaxis), hives, swelling, cough, shortness of breath, and flushing. You should receive medication such as antihistamines before VIMIZIM infusions to reduce the risk of reactions. If a reaction occurs, the infusion should be slowed or stopped and you may be given additional medication. If a severe reaction occurs, the infusion should be stopped immediately and you will receive appropriate medical treatment.

If you have acute febrile or respiratory illness at the time of VIMIZIM infusion you may be at higher risk of life-threatening complications from hypersensitivity reactions. If you use supplemental oxygen or continuous positive airway pressure (CPAP) you should have it available during your infusion in the event of a sudden reaction, or extreme drowsiness/sleep from antihistamines.

Spinal cord damage may occur due to the natural MPS IVA disease process. Signs of spinal cord injury include back pain, numbness and paralysis, and loss of bladder and bowel control. Contact your doctor immediately if you develop any of these symptoms.

The most common side effects reported during VIMIZIM infusions included fever, vomiting, headache, nausea, abdominal pain, chills, and fatigue. These are not all of the possible side effects with VIMIZIM. Talk to your doctor if you have any symptoms that bother you or that do not go away.

Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

For more information, call BioMarin Patient and Physician Support (BPPS) at 1-855-MORQUIO (1-855-667-7846).