NMO support

Objective 2: To develop, strengthen and support National Member Organisations

IPOPI Global PID Patient Meetings

IPOPI XVI Global Patient Meeting – October 12-15, 2022

In 2022, Ipopi welcomed 100 delegates from 34 countries from all over the world  to the XVI Global Patients Meeting (GPM). The GPM is organized back to back with the European Society for Immunodeficiency (ESID) and International Nursing Group for Immunodeficiencies’ (INGID) biennial congresses. Besides the wide selection of topics, this year we introduced to the programme two exciting new sessions: “Back to the future, looking towards 2030”, a thought-provoking discussion on the future of PID’s and a speed dating session to learn about 18 NMO initiatives across diverse topics “PID talks: Share, learn and get inspired.” The Ipopi members were also invited to a sparkling award ceremony where people who have made a difference for the PID community were celebrated.

Regional and National Patient Meetings 

IPOPI Thai PID Meeting – November 22-23, 2022

IPOPI was back in Bangkok, on 22 November and welcomed 200 participants to a fantastic doctor´s meeting dedicated to discussing the latest developments in primary immunodeficiencies in Thailand. On November 23, IPOPI also hosted a patients´ meeting with members of ThaiPOPI to work on their development and discuss solutions for the country for improving the infusion service for IVIG and access to vaccination for PID patients.

This meeting was made possible thanks to the support from Grifols.

IPOPI 4th Regional Asian PID Meeting – November 19-20, 2022 

IPOPI was delighted to be back in person in Asia and welcome 50 participants to the 4th Regional Asian PID Meeting, held on 19-20 November 2022 in Kuala Lumpur, Malaysia.

At this two-day meeting, patient representatives and healthcare professionals from 11 countries from the Asia-Pacific region (Cambodia, China, India, Indonesia, Japan, Malaysia, Nepal, Philippines, South Korea, Thailand, and Vietnam) gathered to discuss exciting developments in Asia and identifying key areas of improvement. This meeting provided a unique opportunity for patient representatives in the region to interact with each other and healthcare professionals, through educational lectures, debating forums, and a workshop.

This meeting was made possible thanks to the support from Takeda.

IPOPI Doctors and PID Patients Meeting Thailand – (Online)

On November 27-28, 2021 IPOPI returned to Thailand to host a doctor and patient meeting for participants interested in learning more about primary immunodeficiencies. The meeting reached its objective to improve awareness of PIDs, diagnosis and management in Thailand and to stimulate discussions for the participants of both the doctors and patients meeting.

The meeting was made possible thanks to support from Grifols.

IPOPI Latin American PID Patients Meeting – (Online)

In mid-October it was finally time for IPOPI to welcome its Latin American National Member Organisations (NMOs) to this year’s regional meeting, organised October 13-14, in parallel with the congress of the Latin American Society for Immunodeficiencies (LASID). The meeting was well attended, with over 35 participants from 10 countries in the region (Argentina, Bolivia, Chile, Ecuador, El Salvador, Mexico, Nicaragua, Paraguay, Puerto Rico, Venezuela), speaking mainly in Spanish. The combination of educational sessions as well as multiple interactive elements created a great mix and many good discussions, and IPOPI was thrilled to once again have the opportunity to bring together our regional patient leaders and strengthen the PID patient community in Latin America.

This meeting was made possible thanks to the support from Takeda.

IPOPI African PID Patients Meeting – (hybrid)

IPOPI started the month of October by welcoming patient representatives from 11 countries from the continent to this year’s African PID Patients Meeting, organised 1-2 October 2021 alongside the 7th Congress of the African Society for Immunodeficiencies (ASID). The theme of this year’s ASID congress was “PID-IEI in Africa: Where and how to find them?”, bringing together both health care professionals and patient representatives from Africa as well as from nearby regions to discuss this important and relevant theme.

This meeting was made possible thanks to the support from National Bioproducts Institute.

IPOPI Indonesian PID Conference – (online)

IPOPI organised a virtual Indonesian PID Conference, held on June 19-20 and 26, 2021, hosting both a Clinical Care Meeting and a PID Patients’ Meeting. The participation in the meeting exceeded expectations, demonstrating the demand and continuous need for educational sessions on primary immunodeficiencies in Indonesia.

This meeting was made possible thanks to the support from Kedrion.

Asian Advocacy Workshop

During 17th and 18th April, 2021, IPOPI’s National Member Organisations (NMOs) from Asia and neighbouring regions took part in IPOPI’s regional Advocacy Workshop,  with the aim of increasing participants knowledge on strategic planning on advocacy and communication, using the metaphor of advocacy work being like preparation for a marathon,

This meeting was possible thanks to the support from