Joenja - leniolisib

Joenja - leniolisib To learn more about Joenja® (leniolisib) and for full Prescribing information visit www.Joenja.com Welcome to the Joenja® (leniolisib) page!

This page is intended to be a resource for patients and caregivers affected by APDS who reside in the United States (US). Approved Use

JOENJA® (leniolisib) is a prescription medicine that is used to treat activated phosphoinositide 3-kinase delta (PI3Kδ) syndrome (APDS) in adults and children 12 years of age and older. Important Safety Information

Tell your healthcare provider if you are pregnant or plan to become pregnant. JOENJA may harm your unborn baby. Your healthcare provider will do a pregnancy test before you start receiving JOENJA. Use effective birth control to prevent pregnancy while taking JOENJA and for one week after you stop taking JOENJA. If you plan to become pregnant, continue taking your birth control for one week after stopping JOENJA. Talk to your doctor about what type of birth control method is right for you while taking JOENJA. It is not known if JOENJA passes into your breast milk. Talk to your doctor about the best way to feed your baby if you take JOENJA. Tell your healthcare provider and pharmacist about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. JOENJA and certain other medicines may affect each other. Tell your healthcare provider if you are scheduled to receive an immunization (vaccine). JOENJA may affect how well a vaccine works. Discontinue JOENJA and seek immediate medical attention if you develop any signs and symptoms of serious allergic reactions including itching, skin redness, hives, rash, difficulty breathing, or swallowing. The most common side effects of JOENJA include headache, inflammation of sinuses, weight gain, and dry, itchy, and inflamed skin (eczema). These are not all the possible side effects of JOENJA. Tell your healthcare provider about any side effect that bothers you or does not go away. You can also report negative side effects to FDA at 1-800-FDA-1088 or www.fda.gov/medwatch, or Pharming Medical Affairs at (800) 930-5221. For more information, please see the full Prescribing Information athttps://joenja.com/prescribing-information.pdf

Community Guidelines

The Community Guidelines listed below are meant to set expectations for this page to ensure it remains a productive and trusted resource. Please keep in mind that the content on this page is not intended to be medical advice, as your doctor is always the best source of information for medical-related questions. Always call 911 in the event of an emergency. The Joenja (leniolisib) channel is brought to you by Pharming Healthcare, Inc. a global commercial stage biopharmaceutical company developing innovative protein replacement therapies and precision medicines for the treatment of rare diseases and unmet medical needs. To keep this community safe and productive, we kindly ask that you avoid using the following in your interactions on this page:

-Certain personally identifiable information, such as an address, email, or phone number
-Harmful or offensive language, such as vulgarity or profanity
-Threats or personal attacks, such as discriminatory or derogatory comments
-Promotion of illegal activity
-Off-topic subjects like politics or religion, or those that may be considered spam, trolling, recruiting for studies, other commercial entities, or advertising
-Incorrect or misleading information, as well as unsolicited or unverified medical advice, such as providing doctor -recommendations or suggesting the use of any specific medication
-Copyright or trademark infringement
-Any adverse events or side effects possibly due to a medication. Any adverse event concerns should be reported immediately to http://www.fda.gov/medwatch or by calling 1-800-FDA-1088

Each comment is evaluated on an individual basis, and we will remove any post or comment that violates our Community or Facebook Guidelines. Comments are reviewed daily, though there may be some questions or comments that take more time for us to answer. If a message is sent or a comment is made on weekends or holidays, there may be an additional delay. In the event of a medical emergency, call 911. Please note, at this time, we are only able to respond to comments and questions in English. For more information about Joenja please visit https://Joenja.com/. Please send us a direct message with any questions or concerns. This page is intended for U.S. residents only and is governed by U.S. laws and regulations. We reserve the right to update our community rules or remove this page, or any of its comments, at any time. Pharming does not endorse and is not responsible for information and opinions shared by community members. While we may share links to third-party sites that contain information our audience may find useful, Pharming does not control or endorse and is not responsible for the content on these third-party sites. Thank you for being a part of this community! JOE-US-2023-0054
Pharming and Joenja logos are registered trademarks of Pharming Intellectual Property, B.V.
© 2025 Pharming Healthcare, Inc. Pharming Healthcare, Inc. 10 Independence Boulevard Suite 401 Warren, NJ 07059

08/11/2025

Since she was a child, Annie’s frequent ongoing health challenges made her doctors concerned. Thankfully, through genetic testing, Annie’s APDS diagnosis was confirmed, and her healthcare team was able to prescribe a new treatment: Joenja.

See how Annie’s APDS diagnosis—and finding Joenja—changed her life. Watch the full video here: https://bit.ly/43ZJSGw

Approved Use: Joenja (leniolisib) is a prescription medicine that is used to treat activated phosphoinositide 3-kinase delta (PI3Kδ) syndrome (APDS) in adults and children 12 years of age and older.

Important Safety Information: Tell your healthcare provider if you are pregnant or plan to become pregnant. JOENJA may harm your unborn baby. Your healthcare provider will do a pregnancy test before you start receiving JOENJA. For more information about Joenja, please see the full Prescribing Information athttps://joenja.com/prescribinginformation.pdf

08/04/2025

For Liam, receiving an APDS diagnosis was transformative. After experiencing frequent illnesses and doctor’s visits throughout his childhood, being prescribed Joenja to help manage his APDS has made a difference in his journey.

See how Liam's journey changed after starting Joenja. Watch the full video here: https://bit.ly/43ZJSGw

Approved Use: Joenja (leniolisib) is a prescription medicine that is used to treat activated phosphoinositide 3-kinase delta (PI3Kδ) syndrome (APDS) in adults and children 12 years of age and older.

Important Safety Information: Tell your healthcare provider if you are pregnant or plan to become pregnant. JOENJA may harm your unborn baby. Your healthcare provider will do a pregnancy test before you start receiving JOENJA. For more information about Joenja, please see the full Prescribing Information athttps://joenja.com/prescribinginformation.pdf

11/22/2024

A diagnosis of APDS can feel overwhelming, but for Tyrek and his mother, Twana, finding the right treatment made all the difference. Learn more about how Joenja ® is used to treat APDS.

Watch as they share their inspiring journey to a diagnosis and the positive impact Joenja has had on Tyrek’s health.

https://joenja.com/real-patient-stories

INDICATION AND USAGE: Joenja (leniolisib) is a prescription medicine that is used to treat activated phosphoinositide 3-kinase delta (PI3Kδ) syndrome (APDS) in adults and children 12 years of age and older.

SAFETY INFORMATION: Tell your healthcare provider if you are pregnant or plan to become pregnant. JOENJA may harm your unborn baby. Your healthcare provider will do a pregnancy test before you start receiving JOENJA. For more information about Joenja, please see the full Prescribing Information at https://shor.by/Ib0K.

06/26/2024

Important Safety Information can be found at this link and at the end of the video. https://joenja.com/

APDS Assist is a comprehensive patient support program available to eligible patients with activated PI3k delta syndrome (APDS) who are prescribed Joenja®.

The program offers patients, caregivers, and their families information and assistance as patients start Joenja.

The APDS Assist program also provides access to an APDS Clinical Educator who can provide one-on-one support and educational resources for patients along their Joenja journey.

Find out more today by visiting www.Joenja.com/APDS-Assist

06/05/2024

https://joenja.com/

Is Joenja right for you?

Hear from a patient living with APDS and his personal journey of diagnosis and treatment with Joenja. Additionally, hear valuable insights from Dr Eve Wu, a Pediatric Rheumatologist and Allergy Immunologist who provides information about the diagnosis and treatment of APDS.

Watch now https://shor.by/BL5z

INDICATION AND USAGE: Joenja is a prescription medicine that is used to treat activated phosphoinositide 3-kinase delta (PI3Kδ) syndrome (APDS) in adults and children 12 years of age and older.
SAFETY INFORMATION: Tell your healthcare provider if you are pregnant or plan to become pregnant. JOENJA may harm your unborn baby. Your healthcare provider will do a pregnancy test before you start receiving JOENJA. For more information about Joenja, please see the full Prescribing Information at Joenja.com.

05/28/2024

joenja.com/

Do you have questions about APDS (activated PI3K delta syndrome), a progressive primary immunodeficiency? Join one of our virtual or in-person speaker programs to hear from a healthcare professional about how APDS is diagnosed and treated with Joenja. Since APDS is a genetic disease, the programs will also cover the significance of testing family members for APDS.

To find out more and register, visit https://apdsprograms.com/

INDICATION AND USAGE: Joenja is a prescription medicine that is used to treat activated phosphoinositide 3-kinase delta (PI3Kδ) syndrome (APDS) in adults and children 12 years of age and older.

SAFETY INFORMATION: Tell your healthcare provider if you are pregnant or plan to become pregnant. JOENJA may harm your unborn baby. Your healthcare provider will do a pregnancy test before you start receiving JOENJA. For more information about Joenja, please see the full Prescribing Information at joenja.com/

05/09/2024

https://joenja.com/

Until now, doctors only treated the signs and symptoms of APDS, a progressive primary immunodeficiency (PI). Joenja® (leniolisib) is the first and only FDA-approved treatment for APDS that works on the source of the disease itself. Joenja was designed to help restore balance to the immune system.

Visit our website to learn more and discuss with your doctor if Joenja could be right for you. joenja.com/

INDICATION AND USAGE: Joenja is a prescription medicine that is used to treat activated phosphoinositide 3-kinase delta (PI3Kδ) syndrome (APDS) in adults and children 12 years of age and older.

SAFETY INFORMATION: Tell your healthcare provider if you are pregnant or plan to become pregnant. JOENJA may harm your unborn baby. Your healthcare provider will do a pregnancy test before you start receiving JOENJA. For more information about Joenja, please see the full Prescribing Information at Joenja.com

https://joenja.com/ In our new video, hear from Tyler, a real patient living with APDS, and his personal journey of diag...
02/19/2024

https://joenja.com/

In our new video, hear from Tyler, a real patient living with APDS, and his personal journey of diagnosis and treatment with Joenja. Plus, hear insights from Dr Eve Wu, a Pediatric Rheumatologist and Allergy Immunologist who provides information about the diagnosis and treatment of APDS.

Watch now https://shor.by/XGFA

INDICATION AND USAGE: Joenja is a prescription medicine that is used to treat activated phosphoinositide 3-kinase delta (PI3Kδ) syndrome (APDS) in adults and children 12 years of age and older.

SAFETY INFORMATION: Tell your healthcare provider if you are pregnant or plan to become pregnant. JOENJA may harm your unborn baby. Your healthcare provider will do a pregnancy test before you start receiving JOENJA. For more information about Joenja, please see the full Prescribing Information at Joenja.com.

01/17/2024

https://joenja.com/

Did you know that APDS is a genetic disease, which means that it can affect other members of your family? The signs and symptoms of APDS can vary even between family members. Testing for APDS is crucial because it is a progressive disease that may worsen over time.

A genetic test can help provide a diagnosis of APDS.

Check out the resources section on our website for help to start the conversation about genetic testing with your family.
https://joenja.com/resources/

INDICATION AND USAGE: Joenja is a prescription medicine that is used to treat activated phosphoinositide 3-kinase delta (PI3Kδ) syndrome (APDS) in adults and children 12 years of age and older.

SAFETY INFORMATION: Tell your healthcare provider if you are pregnant or plan to become pregnant. JOENJA may harm your unborn baby. Your healthcare provider will do a pregnancy test before you start receiving JOENJA. For more information about Joenja, please see the full Prescribing Information at Joenja.com

12/19/2023

Community Guidelines

The Community Guidelines listed below are meant to set expectations for this page to ensure it remains a productive and trusted resource. Please keep in mind that the content on this page is not intended to be medical advice, as your doctor is always the best source of information for medical-related questions. Always call 911 in the event of an emergency.

The Joenja (leniolisib) channel is brought to you by Pharming Healthcare, Inc. a global commercial stage biopharmaceutical company developing innovative protein replacement therapies and precision medicines for the treatment of rare diseases and unmet medical needs.

To keep this community safe and productive, we kindly ask that you avoid using the following in your interactions on this page:

-Certain personally identifiable information, such as an address, email, or phone number
-Harmful or offensive language, such as vulgarity or profanity
-Threats or personal attacks, such as discriminatory or derogatory comments
-Promotion of illegal activity
-Off-topic subjects like politics or religion, or those that may be considered spam, trolling, recruiting for studies, other commercial entities, or advertising
-Incorrect or misleading information, as well as unsolicited or unverified medical advice, such as providing doctor -recommendations or suggesting the use of any specific medication
-Copyright or trademark infringement
-Any adverse events or side effects possibly due to a medication. Any adverse event concerns should be reported immediately to http://www.fda.gov/medwatch or by calling 1-800-FDA-1088

Each comment is evaluated on an individual basis, and we will remove any post or comment that violates our Community or Facebook Guidelines. Comments are reviewed daily, though there may be some questions or comments that take more time for us to answer. If a message is sent or a comment is made on weekends or holidays, there may be an additional delay. In the event of a medical emergency, call 911. Please note, at this time, we are only able to respond to comments and questions in English.

For more information about Joenja please visit https://Joenja.com/. Please send us a direct message with any questions or concerns.

This page is intended for U.S. residents only and is governed by U.S. laws and regulations. We reserve the right to update our community rules or remove this page, or any of its comments, at any time.

Pharming does not endorse and is not responsible for information and opinions shared by community members. While we may share links to third-party sites that contain information our audience may find useful, Pharming does not control or endorse and is not responsible for the content on these third-party sites. Thank you for being a part of this community!

12/12/2023

https://joenja.com/

Never miss your dose of Joenja!

Download the free reminder tone for your twice-daily dose of Joenja. Visit the resources section of the website now to download the reminder ringtone and discover more educational resources.

www.Joenja.com/resources

INDICATION AND USAGE: Joenja is a prescription medicine that is used to treat activated phosphoinositide 3-kinase delta (PI3Kδ) syndrome (APDS) in adults and children 12 years of age and older.

SAFETY INFORMATION: Tell your healthcare provider if you are pregnant or plan to become pregnant. JOENJA may harm your unborn baby. Your healthcare provider will do a pregnancy test before you start receiving JOENJA. For more information about Joenja, please see the full Prescribing Information at Joenja.com

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