IPOPI’s 2021 Review of Activities and Achievements

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IPOPI’s 2021 Review of Activities and Achievements is now available. 2021 was a busy year for IPOPI, filled with events, campaigns, and policy efforts to improve care for patients with primary immunodeficiencies.

The new strategic plan for 2021–2025 served as a guide to strengthen our educational programme in 2021. Throughout the year, we organised several webinars for PID Clinical Care Education in addition to publishing six new educational PID leaflets and a mini-documentary on PIDs with antiinflammatory and rheumatological crossovers. Additionally, we have maintained our support for stakeholder cooperation in initiatives like Screen4Rare and ERN-Rita. IPOPI was also instrumental in the establishment of International Neonatal Screening Day, taking place annually on June 28.

In addition to this, we have organised several EU PID Forums in the European Parliament as well as three successful regional PID patient meetings in Africa (Hybrid), Latin America (Online) and Asia (Online advocacy workshop). We are proud to work with and represent a growing number of national member organisations who all share our common vision to improve PID patient lives.

We hope you will enjoy reading this annual report, which highlights the most significant IPOPI initiatives, campaigns, and events in the previous year.

IPOPI joins antimicrobial awareness campaign

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The World Antimicrobial Awareness Week (WAAW), observed yearly from November 18–24, aims to increase public knowledge of antimicrobial resistance (AMR) and encourage best practices among stakeholders to reduce the emergence and spread of drug-resistant pathogens. To curb AMR effectively, all sectors must use antimicrobials prudently and adopt other preventive measures. Without effective antimicrobials, the success of modern medicine in treating infections would be at increased risk.

IPOPI is a campaign partner

WAAW is organised in partnership with European Antibiotic Awareness Day (EAAD), and IPOPI is engaging in both WAAW and the EAAD to benefit patients with primary immunodeficiencies who depend heavily on antibiotics. In addition to joining the campaign as an EAAD partner, Jose Drabwell from the IPOPI Board will represent IPOPI at the campaign’s launch event on November 17 and offer input from the PID perspective.

For a large portion of individuals with primary immunodeficiency, antibiotic prophylaxis is required for a significant period of their lives in order to fight or prevent infections, lower the risk of hospitalization and enhance their quality of life. Since resistant bacteria complicate PID management, antimicrobial resistance is a growing problem for these patients. IPOPI is participating in this international effort to prevent antimicrobial resistance and ensure that they continue to be effective for patients in need.


See IPOPI’s previous work on antibiotic awareness

New video series on primary immunodeficiencies

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IPOPI is launching a new educational video series on primary immunodeficiencies. With this new series, IPOPI intends to raise awareness of these disorders and encourage discussions about the value of early detection and accessibility to treatment. In recent years, IPOPI has increasingly used videos to foster a better understanding of PIDs among stakeholders and to increase public awareness of PIDs.

The series covers three topics:

Subtitles are available in 6 languages

IPOPI hopes that this educational video series will help raise awareness about the need for improved access to treatment and diagnosis for PID patients. To make them accessible in as many countries as possible, subtitles are available in English, Chinese, Arabic, Portuguese, French and Spanish. Special thanks go to our national member organisations PID Care China, Hajar Morocco, and Iris France for providing subtitles and enabling more people to benefit from these videos.

This series has been made possible thanks to an unrestrictive grant from Takeda.

IPOPI's PID Champion Award winners, finalists and presenters

Meet the winners of the PID Champion Awards 2022

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IPOPI's PID Champion Award winners, finalists and presenters

Award winners, finalists and presenters. From the left: Bruce Lim, Prof Surjit Singh, Jessie Qu, Dr Nahla Erwa, Martine Pergent, Otilia Stanga, Christine Jeffery

At every Global Patients’ Meeting, the IPOPI community comes together to celebrate the PID Champion Awards. On October 13, during a sparkling award ceremony, people whose actions have contributed positively to the PID community were acknowledged and celebrated. New for this year was the BIG Award, a community award celebrating Bold, Innovative and Game-Changing projects from IPOPI’s membership over the past two years.


Professor Surjit Singh, India, received the LeBien Award

Professor Surjit Singh and Martine Pergent at IPOPI's prize ceremony at the Global Patients Meeting 2022.

This award honours an adult who has improved the lives of people with PIDs internationally. Professor Surjit Singh from India received this year’s LeBien Award from the patient community

for years of being an inspiration to the PID community, sharing knowledge, and experiences, and being a great supporter and a true champion for the PID patients community internationally, speaking and teaching in many world regions. Martine Pergent, President of IPOPI, presented the award to Professor Singh during the PID Champion Awards Dinner. She highlighted Professor Singh’s dedication to patients, his efforts to ensure that they receive treatment in a difficult environment, and his years of hard work to establish a PID-specialised unit in Chandigarh, India, where he trains young immunologists from India and the region.

 

Zheng Jian Lei (Jerry Zheng) wins the Luciano Vassalli Award

IPOPI's PID Champion Award Ceremony for the Luciano Vassalli Award, given by Bruce Lim, Magdalena Döragrip and Sergio Vassalli to Jessie Qu from PID Care China.

This award is given to a young person who has made a significant contribution to the PID community. The award was given to Zheng Jian Lei (Jerry Zheng), a 26-year-old patient representative from China. Jerry could not attend the ceremony due to travel restrictions imposed by COVID-19, so Bruce Lim, IPOPI Vice-Chair, and the 2020 winner Magdalena Döragrip from PIO Sweden presented the award in his absence to Jessie Qu, PID Care China.

Jerry was nominated for his dedication and work to support Chinese PID patients, particularly the establishment of a communication group in which patients from all over the country could meet online, exchange information, and receive support from one another. The PID Care China organisation was founded as a result of this group, with very positive outcomes for the country’s PID patients. Jerry continues to be an inspiration to many other PID patients in China.

See Jerry’s acceptance speech

 

SOPPI is the first winner of the new BIG Award

Dr Nahla Erwa and Christine Jeffery during IPOPI's BIG Award Ceremony

For the very first time, IPOPI presented the BIG award, a new community prize celebrating Bold, Innovative and Game-changing (BIG) NMO projects. This award has been designed to value good practice projects from IPOPI members and to support benchmarking efforts.

The Sudanese Organization for Patients with Primary Immunodeficiency (SOPPI) received the first BIG Award for their project on “Sustainability of Immunoglobulin Replacement Therapy (IgRt) for Primary Immunodeficiency (PID) patients in Sudan.” The Award was presented by Christine Jeffery, IPOPI Board Member, to Dr Nahla Erwa representing SOPPI. SOPPI’s project aims to address the pressing need for IVIG supply and the difficulty in accessing the therapy. The IPOPI Award steering committee shortlisted the project, and the National Member Organisations chose it as the winner for being an inspiring project of great importance to the Sudanese PID community. Amongst the three finalists were also the Malaysian Patient Organisation of Primary Immunodeficiencies (MYPOPI) and the Romanian Association for Patients with primary Immunodeficiencies (ARPID).

See SOPPI’s award video

 

IPOPI warmly congratulates all winners on this great achievement.

Previous PID Champion Award winners

IPOPI Board of Directors at the Global Patients Meeting.

Introducing IPOPI’s new Board of Directors

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The new Board of Directors of IPOPI was recently elected by IPOPI’s National Member Organisations, and the results were announced during the Annual General Assembly at the Global Patients’ Meeting on October 14, 2022, in Gothenburg. IPOPI is delighted to congratulate Martine Pergent (France), Otilia Stanga (Romania) and Whitney Ayoub Goulstone (Canada) for being elected for the 2022-2026 term.

We also congratulate Martine Pergent, Bruce Lim and Otilia Stanga on being elected by the IPOPI Board as Chair, Vice-Chair and Treasurer, respectively.

IPOPI’s Executive Committee Members:

  • Martine Pergent – France – IRIS (Chair)
  • Bruce Lim – Malaysia – MyPOPI (Vice-Chair)
  • Otilia Stanga – Romania – ARPID (Treasurer)
  • Jose Drabwell – UK
  • Whitney Ayoub Goulstone – Canada – ImmUnity Canada
  • Andrea Gressani – Italy – Associazione Immunodeficienze Primitive (AIP)
  • Cynthia Olotch – Kenya – PIDs Kenya
  • Roberta Anido de Pena – Argentina – Asociación Ayuda al Paciente con Immunodeficiencia Primaria (AAPIDP)
  • John Seymour – USA – Immune Deficiency Foundation (IDF)

IPOPI Board of Directors at the Global Patients Meeting.

 

 

 

From the left: Cynthia Olotch, Otilia Stanga, John Seymour, Martine Pergent, Johan Prevot (IPOPI Executive Director), Jose Drabwell, Bruce Lim, Andrea Gressani, Whitney Ayoub Goulstone

Not in the picture: Roberta Anido de Pena.