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Resources for you
and your patients
with APDS

If you suspect your patient
has APDS, it’s time to order
a sponsored genetic test*

A genetic test can give you a definitive
APDS diagnosis. Visit navigateapds.com to learn more.
*Eligibility criteria apply.

Find an APDS expert

APDS is a rare, genetic inborn error of immunity (IEI), and as a result, a limited number of clinicians have had first-hand experience with APDS.

If you are interested in finding a medical professional who has experience with diagnosing and managing APDS, this tool may be able to help.
Access physician locator tool

View videos and download materials to help address any questions you or your patients might have about Joenja and/or APDS.

Joenja overview for healthcare professionals
A comprehensive brochure providing a brief introduction to APDS, and a detailed description of Joenja that includes an explanation of how Joenja works, the clinical data on the efficacy and safety of Joenja, as well as Joenja dosing and administration information.
Download
Joenja brochure for patients and caregivers
A brochure containing important information for patients and caregivers to know about Joenja, including how and when to take Joenja tablets, what to expect with Joenja, as well as information about patient support services.
Download
Get to know APDS Assist
Find out more about how APDS Assist works to support you and your patients by watching this short video.
Watch
Mechanism of action video
Watch Joenja in action and gain a clearer understanding of how Joenja targets the underlying immune defect in APDS.
Watch
Reminder tone
Download the free Joenja reminder tone, to set and receive an audio reminder when it’s time for you to take your Joenja tablet.
Download
APDS Expert Locator Tool
A tool enabling patients and caregivers to find medical professionals with expertise in diagnosing and treating APDS. Additionally, APDS experts can list their information in the locator tool.
Access
Joenja® patient case-vignettes
Explore patients’ experiences with Joenja to gain insights about the treatment and learn how it impacted patients with APDS who were observed for 6 years.
Download
Learn about APDS and Joenja®
Dr Hartog, a leading allergy and immunology specialist and clinical expert on APDS, discusses a real life patient case and the path to diagnosis, complexities of APDS, clinical trial results for Joenja® and resources to support you and your patients.
Watch
Joenja® targeting the mechanics of APDS
Dr Mehta, a Hematologist/Oncologist and leading clinical expert on APDS, explains how Joenja targets the mechanics of APDS to help restore immune balance. He presents a real-life patient case and clinical trial results for Joenja®.
Watch

Patient Advocacy

Patients with APDS may find it helpful to know there are hundreds of other people in the US living with APDS. Click on each logo below to learn about patient advocacy groups that are dedicated to supporting the APDS community.
Global Genes
A globally connected community committed to eliminating the challenges of rare disease.
Learn more
Genome
Delivering telehealth genetic counseling and software solutions that increase access to genetic services and support patient decision-making.
Learn more
Primary Immune Deficiency Treatment Consortium
Working together to improve the outcome for patients with rare, life-threatening, inherited disorders of the immune system.
Learn more
Rare Revolution Magazine
Working to bring about a dramatic and wide-reaching change in conditions and attitudes for the rare disease community.
Learn more
National Organization for Rare Disorders (NORD)
Advancing practical, meaningful and enduring change so people with rare diseases can live their fullest and best lives.
Learn more
International Primary Organisation for Primary Immunodeficiencies
A nonprofit international organization and the leading advocate for primary immunodeficiency patients worldwide working in collaboration with patients, doctors, politicians, regulators, pharmaceutical industry, and other relevant stakeholders.
Learn more
Immune Deficiency Foundation (IDF)
Improving the diagnosis, treatment, and quality of life of people affected by primary immunodeficiency through fostering a community empowered by advocacy, education, and research.
Learn more
Jeffrey Modell Foundation (JMF)
A global nonprofit dedicated to early diagnosis, treatment, and ultimately, future cures for primary immunodefiency through awareness, advocacy, and research.
Learn more

About APDS

APDS is a rare, primary immunodeficiency. Hyperactivity along the Pl3Kδ signaling pathway disrupts immune cell balance, causing immune deficiency and immune dysregulation.1-4
Learn more about APDS

About
APDS Assist

This patient support program is designed specifically for your patients with APDS.
See how apds assist can help

References: 1. Joenja (leniolisib). Prescribing information. Pharming Healthcare, Inc; 2023. 2. Maccari ME, Abolhassani H, Aghamohammadi A, et al. Disease evolution and response to rapamycin in activated phosphoinositide 3-kinase δ syndrome: The European Society for Immunodeficiencies-Activated Phosphoinositide 3-Kinase δ Syndrome Registry. Front Immunol. 2018;9:543. doi:10.3389/fimmu.2018.00543 3. Angulo I, Vadas O, Garçon F, et al. Phosphoinositide 3-kinase δ gene mutation predisposes to respiratory infection and airway damage. Science. 2013;342(6160):866-871. doi:10.1126/science.1243292 4. Rao VK, Webster S, Šedivá A, et al. A randomized, placebo-controlled phase 3 trial of the PI3Kδ inhibitor leniolisib for activated PI3Kδ syndrome. Blood. 2023;141(9):971-983. doi:10.1182/blood.2022018546

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Indications and Usage

JOENJA® (leniolisib) is a kinase inhibitor indicated for the treatment of activated phosphoinositide 3-kinase delta (PI3Kδ) syndrome (APDS) in adult and pediatric patients 12 years of age and older.

Important Safety Information

Verify pregnancy status in females of reproductive potential prior to initiating treatment with JOENJA.

Indications and Usage

JOENJA® (leniolisib) is a kinase inhibitor indicated for the treatment of activated phosphoinositide 3-kinase delta (PI3Kδ) syndrome (APDS) in adult and pediatric patients 12 years of age and older.

Important Safety Information

Verify pregnancy status in females of reproductive potential prior to initiating treatment with JOENJA.

JOENJA may cause fetal harm when administered to a pregnant woman. Advise patients of the potential risk to a fetus and to use highly effective methods of contraception during treatment with JOENJA and for 1 week after the last dose. Additionally, advise women not to breastfeed during treatment with JOENJA and for 1 week after the last dose.

Live, attenuated vaccinations may be less effective if administered during JOENJA treatment.

JOENJA may cause hypersensitivity reaction(s), including anaphylaxis. Advise patients to discontinue JOENJA and to seek immediate medical attention if they develop any signs and symptoms of serious allergic reactions.

Use of JOENJA in patients with moderate to severe hepatic impairment is not recommended. There is no recommended dosage for patients weighing less than 45 kg.

Avoid co-administration of JOENJA with other medications known to be strong CYP3A4 inhibitors, strong or moderate CYP3A4 inducers, or BCRP, OATP1B1, and OATP1B3 substrates.

The most common adverse reactions (incidence >10%) were headache, sinusitis, atopic dermatitis, and weight gain.

Seven (33%) patients receiving JOENJA developed an absolute neutrophil count (ANC) between 500 and 1500 cells/microL. No patients developed an ANC <500 cells/ microL and there were no reports of infection associated with neutropenia.

Before prescribing JOENJA, please read the full Prescribing Information.

About Joenja

About Joenja

Clinical Data

Clinical Trials Efficacy Safety & Tolerability Additional Safety

Dosing & Administration

Dosing & Administration

Access & Patient Support

APDS Assist

What is APDS?

What is APDS?

Resources

Resources
Prescribing Information Pharming Contact Us Privacy Policy Terms of Use
Sitemap Cookie Policy NavigateAPDS

Joenja and logo are registered trademarks of Pharming Intellectual Property, B.V.

©2025 Pharming Healthcare, Inc. All rights reserved.
JOE-US-2023-0026v9 08/25

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