IPOPI’s advocacy, support and resources for the APDS and PI community
IPOPI (International Patient Organisation for Primary Immunodeficiencies) is a non-profit, leading advocacy organisation for patients with primary immunodeficiencies (PIs) worldwide. Since it was founded in 1992, IPOPI has worked in collaboration with the PI community and PI stakeholders to:
- raise awareness
- promote knowledge and education
- and improve access to early diagnosis and symptom-management treatments.
PIs are a large, expanding group of different genetic disorders
PIs are caused when parts of the immune system do not work properly. As of 2020 there were over 430 different PIs1, each with different clinical presentations. Because individuals with PIs have a defective immune system, they are more susceptible to infection. Others require a genetic test to confirm diagnosis; however, many remain underdiagnosed. Individuals with undiagnosed PIs can become very ill and risk disability, organ damage and, in some cases, death.
Activated PI3K delta syndrome (APDS) is a recently discovered primary immunodeficiency, previously referred to as PASLI disease
Individuals with APDS have certain white blood cells in the immune system that do not work correctly. These cells are referred to as B and T cells. B and T cells are responsible for attacking bacteria and viruses that cause infection. This is why individuals with APDS often have frequent infections; they are also at greater risk of developing swollen lymph nodes and lymphoma.
In recent years, IPOPI has grown significantly and on a global scale
An increasing number of advocacy and awareness activities reaching out to all corners of the world has meant that the organisation is representing more countries than ever. More recently, clinical care projects have been carried out in pursuit of IPOPI’s mission. These include the International Primary Immunodeficiencies Congress (IPIC). IPIC is a medical congress with a focus on PI clinical care, organised every other year, alternating with IPOPI’s Global Patient Meeting (GPM).
IPOPI’s biennial meeting for its National Member Organisations (NMOs) provide the opportunity for all NMOs to congregate and collaborate
Global Patients Meetings allow IPOPI’s NMOs to:
- discuss advocacy and awareness strategies
- participate in skills-building sessions and workshops
- and receive updates on PI medical and industry developments
Individuals and families with APDS or other PIs can find support through IPOPI’s NMOs
If you or a family member with a PI is searching for a patient group in your country, you can locate and reach out to the relevant NMO here: https://ipopi.org/organisations/
IPOPI recognises one national patient group per country. If there are no patient groups in your country listed, IPOPI encourages you to reach out at info@ipopi.org
IPOPI offers free downloadable e-books on APDS and other PIs
IPOPI’s APDS e-book includes information and advice on diagnosis, clinical presentation, laboratory testing, genetic testing, treatments and lifestyle adjustments for individuals with APDS.
To access the APDS e-book follow: https://ipopi.org/apds-activated-pi3k-delta-syndrome/
Other e-books published by IPOPI include:
- Genetic Diagnosis of PIDs
- PIDs and Cancer
- A Guide for General Practitioners
- Management after Diagnosis
- Moving from Child to Adult Care
- A Guide for Schools
IPOPI also offer free educational leaflets produced for individuals with PIs and their families, and for healthcare professionals. They also run informative webinars, events and meetings. To find out what is coming up visit the IPOPI calendar. https://ipopi.org/about-ipopi/calendar/
PI leaflets can be accessed here: https://ipopi.org/publications/leaflets/
The IPOPI TV (https://tv.ipopi.org) also provides informative videos. Videos feature guest speakers, including PI healthcare specialists.
4ID is IPOPI’s new app for individuals with immunodeficiencies to help them keep track of their conditions
IPOPI has launched an app for individuals with PIs to:
- log symptoms
- update prescriptions
- and view daily health summaries.
The app allows individuals to access their personal health records at any time. This is particularly helpful for individuals who see a variety of healthcare professionals to manage their condition(s).
4ID is available on all devices and does not require a download. Visit https://4id.ipopi.org/ or scan the QR code to start using 4ID
IPOPI’s 2021-2025 objectives:
- Improve access to early diagnosis and patient-centred care
- Build capacity and support IPOPI’s National Member Organisations
- Educate, promote knowledge and data-sharing
- Strengthen multi-stakeholder cooperation
For more information on IPOPI’s Strategic Plan 2021–2025, and to find out how IPOPI plans to meet these targets, please visit the IPOPI website under “Mission and objectives”: https://ipopi.org/about-ipopi/mission-and-objectives/
“IPOPI is committed to continue its work to improve the lives of PI patients, including those living with APDS, worldwide. We are investing our energy in a range of awareness, educational, skills building and advocacy programmes aimed at ensuring better access to early diagnosis and care, working hand in hand with our key stakeholders. Experience has shown us that having a PI united front is key to succeed. We are determined to continue to promote better knowledge and awareness of all PIs. This includes on APDS with a leaflet published in 2020 and an upcoming clinical care webinar.” Johan Prevot Executive Director IPOPI
To learn more about IPOPI click the logo or the social icons
Activated PI3K delta syndrome (APDS) is a primary immunodeficiency (PI). It may also be referred to as a primary immunodeficiency disorder (PID), primary immune regulatory disorder (PIRD), an inborn error of immunity (IEI) and was previously known as PASLI disease.
Reference:
[1] IPOPI website What are PIDs? – IPOPI
