Privacy and Notice of Information Practices
Effective Date: August 23, 2006
Please read carefully prior to using this Web site
BioMarin Pharmaceutical Inc. (“BioMarin”) respects the privacy of visitors to its
Web sites 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 this site (the “Web site”). Please read this entire
Privacy Notice before using this Web site or submitting information to BioMarin
through this Web site.
By using this Web site and whenever you submit information through this site to
BioMarin, you agree with the terms of this Privacy Notice and the applicable
Terms of Use. Use of this Web site is conditioned upon your acceptance of
the terms and conditions of this Privacy Notice, which is part of and incorporated
by reference into, the Terms of Use
of this Web site.
Data collection
Visitors to BioMarin’s Web sites can generally visit without revealing any personally
identifiable information. BioMarin only collects personally identifiable data (including,
but not necessarily limited to, your name, address, telephone number, and e-mail
address and relationship to the BioMarin product or program) when you voluntarily
submit such information to BioMarin through one of our Web sites.
BioMarin maintains the personal information that you voluntarily submit in an electronic
database. BioMarin may use this information as a means to contact you to obtain
additional information, improve this site, or provide you with information that
you have requested or additional information which BioMarin believes may be of interest
to you. BioMarin may use this information within the company for performing marketing
studies and analyses for internal use. Furthermore, BioMarin may share aggregated,
non-personally identifiable statistical and other information about users to third
parties for any purpose, including commercial purposes, but in such cases will not
identify you or any other specific individual. Except as otherwise set forth in
the Terms of Use of the Web
site or this Privacy Notice, BioMarin will not disclose your personal information
to third parties without your consent. However, in the event that disclosure of
your information by BioMarin is required by law, BioMarin may disclose such information
without obtaining your consent.
Any personally identifiable data collected on this Web site may be used and communicated
by BioMarin, or by a third party individual or company acting on behalf of BioMarin,
for processing, communications (such as e-mailing and other mailings) and other
purposes consistent with this Privacy Notice. For example, BioMarin and its agents
and contractors may exchange information described in this Privacy Notice with each
other or with you over the Internet or intranet systems for the purposes of carrying
out the activities and services described above. Agents and contractors of BioMarin
who have access to personally identifiable information are required to protect this
information in a manner that is consistent with this Privacy Notice by, for example,
not using the information for any purpose other than to carry out the services they
are performing for BioMarin.
While BioMarin makes every reasonable effort to protect the information collected
through its Web sites, please be aware that there is always some risk involved when
submitting data over the Internet. We cannot guarantee that our Web site is 100%
safe from illegal tampering or “hacking.” Any data transmitted over the Internet
may be at risk; however, once it is received at BioMarin and entered into the BioMarin
database, any data you have submitted has the same protection that BioMarin extends
to its own confidential information.
We may track the total number of visitors to our Web site, the number of visitors
to each page of our Web site, the sequence or duration of visitors to each page,
IP addresses, and the domain names of our users’ Internet Services Providers, and
we may analyze these data for trends and statistics in the aggregate, but such information
will be in aggregate form only and it will not contain personally identifiable data.
Such aggregate information is not linked to any personally identifiable information
that can identify any individual.
Kids privacy notice
Click here to see the KIDS NOTICE especially for minors.
Our Minors Policy is based on the Children’s Online Privacy Protection Act, which
defines the term “child” to mean an individual under the age of 13. If you are under
13 years of age, you may not use this site or submit to BioMarin information about
yourself, including, but not necessarily limited to, your name, address, telephone
number or e-mail address without the written permission of your parent or guardian.
We suggest that you have your parent register if you are interested in viewing this
Web site. Only the parent/guardian of a child may submit content and/or photos related
to their child. If we discover that any personally identifiable information from
a child under the age of 13 has been submitted by someone other than a parent or
guardian, we will remove that information from our database as soon as possible.
Visitors between the ages of 13 and 18 must obtain permission from their parent
or guardian before registering on this Web site, sending any personally identifiable
information, participating in online discussions, or submitting content to this
Web site.
Unless otherwise specified, you must be at least 18 years of age to participate
in any online promotion or contest.
BioMarin may restrict the ability of any visitor to submit content or to access
any part of the Web site at BioMarin’s sole discretion.
For your reference, the Children’s Online Privacy Protection Act can be found at:
http://www.ftc.gov/ogc/coppa1.htm.
Opt out/updating your information
If at any time you wish to stop receiving e-mails or other communications from us,
or if you have submitted personally identifiable information through this Web site
and would like to have that information deleted from our records, please notify
us.
You may also request access to your personal information held by BioMarin and you
may request that we correct or amend your personal data by contacting us by e-mail
at service@kuvan.com or by telephone at (415)
506-6613. As a reminder to you, when exchanging e-mails, any e-mail that you send
or receive on your employer's e-mail system may be the property of your employer.
Consequently, your employer may have the ability to review your personal information
sent via e-mail.
Links to third-party sites
As a convenience to our visitors, our sites currently contain links to a number
of other (non-BioMarin) sites that we believe may offer useful information. Such
links do not constitute an endorsement by BioMarin of those other Web sites, the
content displayed therein, or the persons or entities associated therewith. The
Privacy Notice presented here does not apply to those sites. You should contact
those sites directly for information on their privacy policies, confidentiality
agreements, and data collection/distribution procedures.
Cookies
Our Web site uses a technology called “non-persistent cookies,” which is a small
data file that a server gives to your browser when you access a Web site in order
to let you access the pages you request and to track the pages visited. Using non-persistent
cookies to track page visits helps us analyze our site usage more accurately. In
cases in which non-persistent cookies are used, we will not collect your personally
identifiable information except with your explicit permission.
If a portion of this Web site requires a password, you are giving us explicit permission
to use a “persistent cookie,” which is a small data file that is generated when,
as a registered user of this Web site, you enter your assigned user ID and password
and access the site. This file is stored on your computer, and enables your browser
to access each page that is in the password-protected area.
Please note that linked non-BioMarin sites may also use cookies. BioMarin cannot
control the use of cookies by these non-BioMarin sites. We also want you to know
that when you link from this Web site to another Web site, that site may have the
ability to recognize that you have come from a BioMarin site. If you do not want
any other Web sites to know that you have been on this Web site, we recommend that
you do not use the links provided on our site. If you have any questions about how
third party sites use cookies, you should contact such third parties directly.
Modifications
This Privacy Notice and the Terms of Use of the Web site constitute the complete
agreement between the parties with respect to their subject matter and supersede
any prior agreement or communication. BioMarin reserves the right to modify this
Privacy Notice without prior notice. In the event BioMarin updates or modifies this
Privacy Notice, BioMarin shall endeavor to post such updates or modifications on
this Web site for a period of thirty (30) days following any such modifications.
Therefore, you are advised to review this Privacy Notice occasionally, or at least
every thirty (30) days. Your continued use of this Web site subsequent to BioMarin's
notice of modification of this Privacy Notice shall constitute your acceptance of
the modified Privacy Notice.
Kids Privacy Notice
Effective Date: August 24, 2006
Kids! Read this carefully before you use this Web site!
Your privacy is important to BioMarin Pharmaceutical Inc. (“BioMarin”) and we treat
your private information seriously.
This notice tells you how BioMarin can collect, use, and share information that
children may provide through this site (the “Web site”). Please read this whole
notice before you use this Web site. If you have any questions or read something
you do not understand, please ask your parent or guardian to help answer your questions
or to contact BioMarin for you.
You must be at least 13 years old in order to use this Web site and to post or enter
anything here unless your parent says to BioMarin that you can.
If you want to use this site now ask your parent to register you and use it together.
If you are under 13 years of age and want to use this site without your parent,
you need to get them to sign the consent form before you can enter any information
about yourself (like your name, address, phone number, e-mail address or hobbies)
or surf these pages.
If we find out that someone gave us private information about a child under the
age of 13 besides their parent, we will erase that from our Web site and our database
as soon as possible.
Visitors between the ages of 13 and 18 must also get permission from their parent
or guardian before using this Web site.
Kids under 18 can’t enter into most of the contests or get free stuff unless BioMarin
says so.
What we know about you
Some pages can be seen without getting any private information from you, but other
pages may ask for information about you before you can use them. In those areas,
we may ask you for your name, address, telephone number, and e-mail address and relationship
to the BioMarin product or program. We may also collect certain information from
your computer about you to learn about who uses our Web site. This information includes
your computer IP addresses, domain names of our users’ Internet Services Providers,
the sequence or duration of visitors to each page, the total number of visitors
to our Web site, and the number of visitors to each page of our Web site. We use
this information to make our Web site better and do not keep it as part of our information
about you personally. So we may count the number of times you visit, but we will
only look to see how many people visited a page overall and we can’t go back to
look at what exactly you did and when. In other words, this data will be in aggregate
form only and it will not contain personal information; nor is it linked to any
personal information that can identify any individual.
Cookies for your computer
We also use “non-persistent cookies,” which is a small data file that a server gives
to your browser when you access a Web site in order to let you access the pages
you request and to track the pages visited. Using non-persistent cookies to track
page visits helps us analyze our site usage more accurately. In cases in which non-persistent
cookies are used, we will not collect your personally identifiable information except
with your explicit permission. If a portion of this Web site requires a password,
you are giving us permission to use a “persistent cookie,” which is a small data
file that is generated when, as a registered user of this Web site, you enter your
assigned user ID and password and access the site. This file is stored on your computer,
and enables your browser to access each page that is in the password protected area.
When we collect personal information, we only collect such information that is reasonably
necessary for you to participate in the activity on this Web site. We are not allowed
to condition your participation in any activity on this Web site on your disclosing
more information than is reasonably necessary to participate in such activity.
How we use your information
BioMarin may use your personal information to:
- Contact you to get more information.
- Process your information.
- Communicate with you.
- Make this Web site better.
- Give you information that you asked for or that we think might be interesting to
you.
- Perform marketing studies and analyses for internal use.
Who else can share your information
If you register on this Web site to post anything, your information may be put on
the Web site where other people can see it. This happens if you decide to post a
message, photo, or profile on the Web site with your username. Other visitors to
the Web site will be able to see your post. BioMarin may also share your personal
information with people who help with our Web site or other services. Other people
who may share your personal information also have to agree to keep it safe and secret.
BioMarin may share information about the groups of people who use this Web site
with other people, but that information will not list your name or personal information
separately. In other words, we may share aggregated, unidentifiable statistical
and other information about users with third parties for any purpose, including
commercial purposes, but in such cases we will not identify you or any other specific
individual. Your parent can choose if they will allow us to collect any of your
personal information and they can choose not to allow other people to get your information.
Parents, you have the option to consent to our collection and use of your child’s
personal information without consenting to the disclosure of that information to
third parties. Also, your parent may review the information we collect from you,
ask to have it deleted and/or refuse to permit our further use or maintenance of
that information by contacting the Web site operator as provided in this Privacy
Notice. Except as otherwise set forth stated in this Privacy Notice, BioMarin will
not disclose your personal information to third parties without you or your
parent’s consent. However, in the event that disclosure of your information by BioMarin
is required by law, BioMarin may disclose such information without obtaining consent.
Kids, that means that unless we ask you first or we have to share it to follow the
law, BioMarin will not give your personal information to anyone else that we did
not talk about here.
How to contact us
If you have any questions, comments or concerns about how your personal information
is handled on this Web site, you may contact the operator of this Web site at:
BioMarin Pharmaceutical Inc.
105 Digital Drive
Novato, CA 94949
USA
(415) 506-6700
webmaster@kuvan.com
Modifications
BioMarin can change this notice anytime. We will post changes to this notice on
the Web site so you should read this notice again if you come back to this site
at another time. If you visit this Web site after we make changes, we will think
that you and your parent agree with the rules for the Web site and you agree with
this notice. If you or your parents do not agree, you should let us know by sending
us an e-mail at info@kuvan.com.
Indication
KUVAN® (sapropterin dihydrochloride) Tablets is approved to reduce blood Phe levels
in patients with hyperphenylalaninemia (HPA) due to tetrahydrobiopterin- (BH4-)
responsive Phenylketonuria (PKU). KUVAN is to be used in conjunction with a Phe-restricted diet.
Important Safety Information
High blood Phe levels are toxic to the brain and can lead to lower intelligence
and decrease in the ability to focus, remember and organize information. Any change
you make to your diet may impact your blood Phe level. Follow your doctor’s instructions
carefully. Your doctor and dietitian will continue to monitor and may adjust your
diet throughout your treatment with KUVAN.
If you have a fever, or if you are sick, your Phe level may go up. Tell your doctor
and dietitian as soon as possible so they can see if they have to adjust your treatment
to help keep your blood Phe levels in the desired range.
KUVAN is a prescription medicine and should not be taken by people who are allergic
to any of its ingredients. Tell your doctor if you have ever had liver or kidney
problems, are nursing or pregnant or may become pregnant, have poor nutrition or
are anorexic. Your doctor will decide if KUVAN is right for you. Tell your doctor
about all the medicines you take.
The most common side effects reported when using KUVAN are headache, diarrhea, abdominal
pain, upper respiratory tract infection (like a cold), throat pain, vomiting, and
nausea.
To report SUSPECTED ADVERSE REACTIONS, contact BioMarin Pharmaceutical Inc. at 1-866-906-6100, or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.
Please read the full Patient Information by clicking here.