New video series on primary immunodeficiencies

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 10 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, Arabic, Chinese, Danish, Dutch, French, Italian, Portuguese, Romanian and Spanish. Special thanks go to our national member organisations PID Care China, Hajar Morocco, Iris France, IDF Denmark, SAS Netherlands, ARPID Romania and AIP Italy 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.

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IPOPI's PID Champion Award winners, finalists and presenters

Meet the winners of the PID Champion Awards 2022

 

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

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IPOPI Board of Directors at the Global Patients Meeting.

Introducing IPOPI’s new Board of Directors

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.

 

 

 

 

 

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Screen4Rare and MEP Alliance for Rare Disease Newborn Screening

Screen4Rare and its founding organisations (IPOPI, ISNS,  and ESID) are pleased to share the meeting report from the recent Screen4Rare  hybrid event on June 29, in Brussels, organised with the support of the MEP Alliance for Rare Disease Newborn Screening (NBS).

The event, which was held in connection with International Neonatal Screening Day, focused on “Establishing Best Practices – How Can Newborn Screening Be Supported in the European Union.” It was hosted by the Member of the European Parliament (MEP) Stelios Kympouropoulos (EPP, Greece), and moderated by Mr Johan Prévot, Executive Director of the International Patient Organisation for Primary Immunodeficiencies (IPOPI).

This first event by Screen4Rare and the MEP Alliance for Newborn Screening for Rare Diseases received significant interest from Key Opinion Leaders around the world, with over 100 participants in-person and online.

The next event will take place during the second half of 2022 and the date will be available in IPOPI’s calendar.

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AGORA: New consortium for improved gene therapy access in Europe

IPOPI was pleased to represent the PID patients’ community at the first meeting of the AGORA (Access to Gene therapies fOr RAre disease) consortium. The new consortium, launched on September 22, aims to facilitate access to gene therapies for patients with ultra-rare diseases, in Europe. The meeting was held at London’s Great Ormond Street Hospital for Children (GOSH) and attended by founding members from six countries representing academic groups, regulators, funders, patient advocacy groups and drug developers.

Long and short-term objectives

Ultimately, AGORA aims to create an independent, sustainable, not-for-profit entity that can support marketing authorisation, delivery and access to therapies which are not commercially sustainable and therefore would be unavailable to patients.

In the short-term, AGORA will seek to explore the hurdles that currently exist and identify areas of potential change to enable sustainable access to treatments, highlighting better the scientific value, competence and high expertise of the consortium which will provide new ideas and solutions. IPOPI is committed to continuing its collaboration with the AGORA consortium and all relevant stakeholders in the field of gene therapies.

Read the AGORA press release.

 

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