All about APDS

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All about APDS

All about APDS aims to support those impacted by activated PI3K delta syndrome (APDS) Any posts concerning medications will be removed. laws and regulations.

The All About APDS page is intended to be an online community for those living with or caring for someone affected by activated PI3K delta syndrome (APDS) and to provide a place to share personal experiences in order to educate, support, and inspire each other. We encourage you to connect with others, share information, and ask questions. This page is for information sharing about APDS and is not intended to discuss medications nor engage in giving medical advice. The AllaboutAPDS 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. It is important to keep in mind that the content on this page is not intended to be medical advice. Your doctor is always the best source of information for medical guidance and questions. To keep this community safe and productive, we kindly ask that you avoid using the following in your interactions on this page:

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• 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 APDS, please visit https://allaboutapds.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. 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! COR-US-2021-0005

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Pharming Healthcare, Inc. 10 Independence Boulevard Suite 401 Warren, NJ 07059

10/27/2025

If you or a family member have been diagnosed with APDS (activated PI3K delta syndrome), genetic testing may provide valuable answers for everyone.

APDS is an underdiagnosed primary immunodeficiency (PI) and genetic disease, which means multiple family members may also have it, even if they have different symptoms or none at all.

Use our Family Health Tree worksheet to track your family’s health history and help you feel prepared to talk to your doctor about genetic testing: https://bit.ly/47TYUzj

10/20/2025

Dealing with APDS (activated PI3K delta syndrome) symptoms—like frequent and severe sinus and ear infections, swollen lymph nodes, and autoimmune conditions—can be painful and frustrating. Whether you've been diagnosed with this primary immunodeficiency (PI) or are still searching for a diagnosis, visit our Physician Locator Tool to quickly find a physician familiar with genetic testing and diagnosing and managing APDS in your area: https://bit.ly/4l5NkoT

10/13/2025

Have you struggled with conditions like frequent and severe ear and sinus infections since infancy? Did you know they could be symptoms of APDS? A genetic test may help you get a clear diagnosis—and help your doctor provide the right treatment plan.

Talk to your doctor or visit our website to learn more: https://bit.ly/42aglaz

APDS, activated PI3K delta syndrome, is an underdiagnosed genetic primary immunodeficiency with symptoms that start in infancy.

10/06/2025

People with APDS are often misdiagnosed because its symptoms mimic medical
conditions like recurrent, severe sinus and ear infections, other immunodeficiencies, autoimmune disorders, or even cancers. Pinpointing APDS as the root cause of your symptoms is the key to getting an accurate diagnosis and the right care plan.

Get the facts and find support on our website: https://bit.ly/4j1mlcu

10/01/2025

Today is APDS Awareness Day 💙
APDS (activated PI3K delta syndrome) is a rare primary immunodeficiency that can be hard to recognize, as the signs and symptoms vary from person to person.
If you or a loved one has been diagnosed with APDS, today is a chance to share your story and help raise awareness. Invite friends and family to learn more — and encourage them to register to speak with an APDS Clinical Educator* (ACE), who can answer questions by phone, email, or in person.

👉 Learn more: https://AllaboutAPDS.com/ace-connect
*APDS Clinical Educators do not provide medical or treatment advice or replace discussions with your physician.

09/29/2025

Primary immunodeficiencies (P*s) like APDS(activated PI3K delta syndrome) can be complex, but you’re not alone. Whether you have a confirmed diagnosis or your doctor suspects you may have it, learning more about APDS can empower you to take an active role in your care. Sign up for information and updates about APDS symptoms, resources for genetic testing, managing your disease, and more: https://bit.ly/4cVk94n

09/22/2025

Primary immunodeficiencies (P*s) are diseases where the immune system does not function properly. This means that people with a PI can develop frequent, severe, or unusual infections.

While the number of infections can vary from person to person, if someone you know experiences an unusually high frequency or severity of infections, it could signal a PI such as APDS.

To help recognize the signs and symptoms of APDS, the 10 Warning Signs were developed in partnership with the Modell Foundation.
Download the 10 Warning Signs from our website. If appropriate, discuss them with your doctor to determine if testing for a PI, such as APDS, should be considered.

Click Here: https://bit.ly/41QAsKA

09/15/2025

Today is World Lymphoma Awareness Day 💚
Some people living with APDS (activated PI3K delta syndrome) may also develop lymphoma. While not everyone with APDS will experience this, it’s important to understand the possible complications so you can feel informed and supported.

If you or a loved one has signs of APDS — such as repeated infections, swollen lymph nodes, or a family history of immune conditions — talk to your doctor. Genetic testing may help provide answers and guide clinical care.
Learn more: https://bit.ly/44BymS1

*Activated PI3k delta syndrome

09/08/2025

If you or a family member have developed lymphoma, especially under the age of 25, your doctor may recommend genetic testing for primary immunodeficiencies ( P*s) like APDS (activated PI3K delta syndrome). People with APDS are at greater risk for developing lymphoma because of their weakened immune systems, so an early PI diagnosis is important.

Learn more about the symptoms of APDS and how it can be diagnosed and managed: https://bit.ly/44BymS1

09/02/2025

❓ Did you know? ❓ Common symptoms of APDS—frequent, severe sinus and ear infections, enlarged lymph nodes, and more—often starting in infancy. As you get older, they can progress to more serious conditions like organ damage or even lymphoma, so getting an accurate diagnosis is important.

Talk to your doctor or visit our website to learn more: https://bit.ly/42aglaz

APDS, activated PI3K delta syndrome, is an underdiagnosed genetic primary immunodeficiency with symptoms that start in infancy.

08/25/2025

Primary immunodeficiencies, such as APDS, are usually caused by hereditary genetic defects, which means that there can be multiple family members that are affected.

Completing your family health history using the resource on our website may help you track your family’s history of known or suspected APDS.

Discuss this with your doctor to confirm if you or members of your family are candidates for genetic testing: https://bit.ly/4lgcLmz

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Pharming Healthcare Inc, 10 Independence Boulevard
Warren, NJ
07059

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https://www.AllaboutAPDS.com/, https://www.youtube.com/channel/UCKl0kXT4z-z3FMTQKnTP42A, https://www.linkedin.com/showca

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