These events are intended for individuals in the U.S. living with XLH and their families and caregivers.
How do I register?
Identify the event you would like to attend, click the register button, and complete the registration form. Once you have registered, you will receive a confirmation email with program details.
Who can help me if I'm having difficulty with the online registration?
If you are having difficulty with the online registration, please call 1-888-210-0079.
Is there a cost to attend?
No, there is no cost to attend these programs. Meals will be provided at the local events.
When should I arrive?
For local programs, it is recommended that you arrive 15 minutes prior to the program's start time in order to sign in and find a comfortable seat. For webinar programs, please log on to the webinar 5 minutes before the start of the program.
Is there a limit to how many people can accompany me?
These events are intended for individuals in the U.S. living with XLH and their families and caregivers. A maximum of three family members/caregivers are permitted to accompany you for an in-person event.
How do I log in for a webinar?
Pre-registration is required for all webinar programs. About 1 day before the webinar, you will receive an email with the login information and event URL. This reminder email includes helpful information about logging in to a webinar and a help desk phone number to call if you are having difficulty connecting.
Thank You
Keep an eye on your inbox for upcoming events and helpful information about XLH and
CRYSVITA® (burosumab-twza).
CRYSVITA is a prescription medicine used to treat adults and children 6 months of age and
older with X-linked hypophosphatemia (XLH).
What is CRYSVITA?
CRYSVITA is a prescription medicine used to treat adults and children 6 months of age and
older with X-linked hypophosphatemia (XLH).
Important Safety Information
You should not take CRYSVITA if:
You take an oral phosphate supplement and/or a specific form of vitamin D supplement (such as calcitriol, paricalcitol, doxercalciferol, calcifediol).
Your phosphorus levels from a blood sample are within or above the normal range for age.
You have kidney problems.
What is the most important information you should know about CRYSVITA?
Some patients developed allergic reactions (e.g., rash and hives) while taking CRYSVITA.
Your doctor will monitor you for symptoms of an allergic reaction while you are taking
CRYSVITA. Your treatment may need to be discontinued for serious allergic reactions.
High levels of phosphorus in the blood have been reported in some patients taking
CRYSVITA. This may be related to a risk of high calcium levels in the kidneys. Your
doctor will collect blood samples to monitor your levels. If you are already taking
CRYSVITA, dose interruption and/or dose reduction may be required based on your serum phosphorus levels.
Administration of CRYSVITA may result in reactions at the injection site, such as hives,
reddening of the skin, rash, swelling, bruising, pain, severe itching of the skin, and
collection of blood outside of a blood vessel (i.e., hematoma). Call your doctor if you
develop an injection site reaction. CRYSVITA may be discontinued if severe injection site reactions occur.
What are the possible side effects of CRYSVITA?
Adverse reactions that were seen in children with XLH are:
Fever
Injection site reaction
Cough
Vomiting
Pain in arms and legs
Headache
Tooth abscess
Dental cavities
Diarrhea
Decreased vitamin D levels
Toothache
Constipation
Muscle pain
Rash
Dizziness
Nausea
Adverse reactions that were seen in adults with XLH are:
Back pain
Headache
Tooth infection
Restless legs syndrome
Decreased vitamin D levels
Dizziness
Constipation
Muscle spasms
Phosphorus levels increased in the blood
Narrowing of the spaces within the spine is common in adults with XLH, and pressure on
the spinal cord has been reported in adults taking CRYSVITA. It is not known if taking
CRYSVITA worsens the narrowing of the spaces within the spine or the pressure on the
spinal cord.
Before taking CRYSVITA, tell your doctor about all of your medications
(including supplements) and medical conditions, including if you:
Are taking oral phosphate and/or active vitamin D (such as calcitriol, paricalcitol,
doxercalciferol, calcifediol).
Are pregnant, think you may be pregnant, or plan to become pregnant. There is not enough
experience to know if CRYSVITA may harm your unborn baby. Report pregnancies to the
Kyowa Kirin, Inc. Adverse Event reporting line at 1-844-768-3544.
Are breastfeeding or plan to breastfeed. There is not enough experience to know if
CRYSVITA passes into your breast milk. Talk with your doctor about the best way to feed
your baby while you receive CRYSVITA.
While taking CRYSVITA, tell your doctor if you experience:
An allergic reaction such as rash or hives
A rash, swelling, bruising, or other reaction at the injection site
New or worsening restless legs syndrome
These are not all the possible side effects of CRYSVITA. Call your doctor for
medical advice about side effects.
You may report side effects to the FDA at (800) FDA-1088 or
www.fda.gov/medwatch. You may also report side effects to Kyowa Kirin, Inc. at
1-844-768-3544.
CRYSVITA is a prescription medicine used to treat adults and children 6 months of
age and older with X-linked hypophosphatemia (XLH).
Important Safety Information
You should not take CRYSVITA if:
You take an oral phosphate supplement and/or a specific form of vitamin D supplement (such
as calcitriol, paricalcitol, doxercalciferol, calcifediol).
Your phosphorus levels from a blood sample are within or above the normal range for age.
You have kidney problems.
What is the most important information you should know about CRYSVITA?
Some patients developed allergic reactions (e.g., rash and hives) while taking CRYSVITA.
Your doctor will monitor you for symptoms of an allergic reaction while you are taking
CRYSVITA. Your treatment may need to be discontinued for serious allergic reactions.
High levels of phosphorus in the blood have been reported in some patients taking CRYSVITA.
This may be related to a risk of high calcium levels in the kidneys. Your doctor will
collect blood samples to monitor your levels. If you are already taking CRYSVITA, dose
interruption and/or dose reduction may be required based on your serum phosphorus levels.
Administration of CRYSVITA may result in reactions at the injection site, such as hives,
reddening of the skin, rash, swelling, bruising, pain, severe itching of the skin, and
collection of blood outside of a blood vessel (i.e., hematoma). Call your doctor if you
develop an injection site reaction. CRYSVITA may be discontinued if severe injection site reactions occur.
What are the possible side effects of CRYSVITA?
Adverse reactions that were seen in children with XLH are:
Fever
Injection site reaction
Cough
Vomiting
Pain in arms and legs
Headache
Tooth abscess
Dental cavities
Diarrhea
Decreased vitamin D levels
Toothache
Constipation
Muscle pain
Rash
Dizziness
Nausea
Adverse reactions that were seen in adults with XLH are:
Back pain
Headache
Tooth infection
Restless legs syndrome
Decreased vitamin D levels
Dizziness
Constipation
Muscle spasms
Phosphorus levels increased in the blood
Narrowing of the spaces within the spine is common in adults with XLH, and pressure on the
spinal cord has been reported in adults taking CRYSVITA. It is not known if taking CRYSVITA
worsens the narrowing of the spaces within the spine or the pressure on the spinal cord.
Before taking CRYSVITA, tell your doctor about all of your medications
(including supplements) and medical conditions, including if you:
Are taking oral phosphate and/or active vitamin D (such as calcitriol, paricalcitol,
doxercalciferol, calcifediol).
Are pregnant, think you may be pregnant, or plan to become pregnant. There is not enough
experience to know if CRYSVITA may harm your unborn baby. Report pregnancies to the Kyowa
Kirin, Inc. Adverse Event reporting line at 1-844-768-3544.
Are breastfeeding or plan to breastfeed. There is not enough experience to know if CRYSVITA
passes into your breast milk. Talk with your doctor about the best way to feed your baby
while you receive CRYSVITA.
While taking CRYSVITA, tell your doctor if you experience:
An allergic reaction such as rash or hives
A rash, swelling, bruising, or other reaction at the injection site
New or worsening restless legs syndrome
These are not all the possible side effects of CRYSVITA. Call your doctor for
medical advice about side effects.
You may report side effects to the FDA at (800) FDA-1088 or www.fda.gov/medwatch.
You may also report side effects to Kyowa Kirin, Inc. at 1-844-768-3544.