22nd-29th April 2019

Some of our favourite events

Here are some great examples of the way our NMO and corporate communities have made the most of World PI Week around the world. For tips on putting on your own event, view our Top Tips section.


PI webcasts with expert doctors in Canada to spread the word

In Canada, Immunodeficiency Canada focused on raising public and physicians’ awareness about PI. They created national PI Webcasts with Montreal General Hospital’s Dr. Alexander Langlois, who discussed family matters and Dr. Salma Alkhammash presenting on autoinflammation immunodeficiency and possible autoimmunity. PI webcasts are a learning opportunity for physicians and other interested healthcare professionals. The organization also worked for media coverage including press announcement of guidelines to improve patient care and treatments.

Uganda: engaging the younger generations to increase PI awareness

In Uganda, UPOPI (Patient Organisation for PID Uganda) organised a School class on PI disease at the Sunday School of St Rachael Church, Kampala Archdiocese. They hold lectures at 3 universities (Health Sciences/Medical School) about PIDs’ most common signs, including case studies and presentation of global trends and challenges to educate the future healthcare professionals. UPOPI also arranged awareness raising activities for children and wishes for PI and created news videos to inform about Primary Immunodeficiencies.

Sweden walks for PI!

In Sweden, Swedish Patients Organisation (PIO)invited their supporters to go for a walk for PI: They dressed in white & black to feature the colours of the “Think Zebra” campaign, took pictures, and report their time on an online form on the PIO website.

PIO also had an information booth at the health library in Växj, where they disseminated materials about PI.

Additionally, PIO organised a Social media communication and exchange of information on PI, encouraging patients to contribute to the national PIDcare quality registry.

Video clip, TV adverts, Free hot line, screen life messages on the spotlight in Russia

In Russia, the Sunflower Charity Foundation (Association for Primary Immunodeficient Patients) organised educational events for healthcare professionals, patients and the general public. Beyond, the Foundation held launched a national communication campaign “Open World” to support children with PI, recorded ‘Screen Life’ messages and featured stories of people with PI on a dedicated charity page. The Foundation recorded and launched a video clip about PI and immunity involving healthcare professionals, children with PI and Top Russian celebrities, developed by children and professional filmmakers of the project “KinoShkid”. In order to allow everybody to ask questions about immunity issues and PI a Free Hot Line was available in the entire country during two days. Last but not least, “12 PI Warning Signs” video-ad broadcasted on national TV channels and online news outlets to spread awareness and educate the general public.

Morocco drives family and children activities to celebrate the campaign

In Morroco, HAJAR (HAJAR Association to help Children with Primary Immunodeficiencies) and the Arab Society for Primary Immunodeficiencies (ARAPID) organised children activities during World PI Week and shared educational material about Primary Immunodeficiencies. Patients and their families had the chance to get together for a picnic and enjoy a walk in the forest.  Hajar’s friends also participated in the blood donation day. All these activities received media coverage so the general public could also learn about Primary Immunodeficiencies and the people living with it.

Malaysia runs a roadshow & collaborative Health Day

Malaysia celebrated World PI Week by launching the MyPOPI leaflets “Is it Just An Infection?” and “10 Warning Signs of PI”.  MyPOPI (Malaysia Patient Organization of Primary Immunodeficiencies) also distributed educational materials in Roadshows to inform the general public about PI and organized  a  Health talk forum and educational session about the 10 warning signs of PI. Patients were given the opportunity to tell their stories in a Patient experience-sharing session.

Medical students, nurses, haemophilia associations and blood services got together to jointly organise a Health Day to emphasize the importance of interprofessional collaboration. Last but not least, a blood-plasma donation day was hold to raise awareness, share the stories of carers and encourage donations.

Patients at the centre of World PI Week activities in Germany

The German Patient Organisation for Primary Immunodeficiencies (DSAI) organized a Patient education day to inform about PI and empower patients in their daily lives.

DSAI also organized online and press campaigns on the warning signs of PI in children and adults and launched video clips on different PI related topics on social media. They also distributed information about PI via pharmacies, to reach an even bigger audience. Especially exciting for everybody was the patients – plasma donors meeting, where people living with PI could chat and connect with plasma donors. This was a great opportunity to enhance dialogue and understanding.

Netherlands joins the dots between World PI Week and Rare Disease Day

In the Netherlands, the patient organisation Stitching voor Afweerstoornissen – SAS organised a Patient Contact Day. It contained 9 workshop sessions on the impact of PI diagnosis, the immune system, developments in newborn screening, research into diagnostic delays and the role of microbiome in CVID. Parents of children living with PI could share their experiences and get advice and support.  In a make-up session on the theme of the Rare Disease Day 2018 “making the invisible visible” PI was connected to other rare diseases. The Rotterdam Erasmus University Hospital hold a Medical Symposium on PI, with over 100 participants: patients, family members, nurses and doctors.

Moroccan NMO Hajar wins the IPOPI collaborative event grant!

IPOPI’s Moroccan NMO, Hajar, has won the IPOPI WPIW Collaborative grant and is now very busy organising a multi-stakeholder local awareness-raising campaign!

Hajar’s campaign will feature a PID Spring school event focusing on Gene Therapy, a Family Day, a fundraising Gala Dinner, a Blood collection day programme focusing on IVIG supply, and a meeting with the Moroccan Health Minister. All these events will be supported and promoted through a local media campaign and involve a range of stakeholders to raise awareness. Check back here after the 2013 campaign for an update.

This special grant was made available to award the best NMO proposal involving patients but also other stakeholders such as doctors, nurses, politicians, etc.  IPOPI received numerous great applications, besides Morocco including Argentina, Brazil, Iceland, India, Portugal and Spain which made the final decision very difficult to our Board Members. We’re delighted that IPOPI is so committed to continuing to support the national implementation of World PI Week now and in the future.

Sweden goes wireless

Swedish patient PI Organization (PIO) took their events online – and on the airwaves! PIO organised two online lectures about PI and the immune system, given by Professor Ann Gardulf and Professor Anders Fasth; both well renowned for their expertise and dedication to PI. PIO also arranged for a radio interview with Professor Ann Gardulf and a PI patient during WPIW. (You can listen to the original broadcast here.) 

Belgian patient and physician groups take action

In Belgium, the Belgian Organisation for Patients with Primary Immunodeficiencies (BOPPI) put stands in several public places to highlight and increase awareness of primary immunodeficiencies. They also distributed bags and pocket cards printed with ‘the 10 warning signs’ and sold special Belgian sweets. The Belgian Primary Immune Deficiency (Physician) Group (BPIDG) also organized their bi-annual scientific meeting on the defects of the innate immune system with attendance from more than 60 physicians.

The local Baxter team, who supported BOPPI in these events, adapted the PI poster to include the first step of diagnosis to the warning signs. The poster was then distributed among PI experts in Belgium.

Brazil tugs at heartstrings

Vídeo Imunodeficiência

The Brazilian Association of Immunodeficiency (ABRI) wanted to raise awareness of the importance of early diagnosis and the most appropriate treatment for PI patients. A key element of their campaign was the creation of a short, moving video showing a young baby being treated for PID. Watch the video here or visit the ABRI website for more information. 

Nationwide activity in Argentina from AAPIDP

In Argentina, the Association for PI patients (AAPIDP) organized several events during World PI Week throughout the country.

  • The association shared a stand with the Transfusion Medical Network (TMN), in central Buenos Aires. TMN and AAPIDP worked together to create awareness of the need for blood as well as bone marrow donations. Leaflets were distributed and posters displayed, and they even managed to organize blood donations on the spot.
  • Roberta A de Pena, president of AAPIDP attended a “Photographic Exhibition” on ‘the 10 warning signs’ of PI at the University of Córdoba.
  • In another province, Tucumán, a meeting at the local children´s hospital brought together physicians, nurses and biochemists to learn more about PI. While in the city of Rosario, Dr Oleastro and Dr Galicchio spread awareness of PI at the children’s hospital Victor Vilela. In the Palermo Parks in the city of Buenos Aires an advertising trailer distributed leaflets to the general public.
  • During the week, a number of articles were published in the media, newspapers, magazine and websites. Radio and TV programmes broadcast information and leaflets were handed out in hospitals, universities, schools and on the street. 

Children’s voices sent to Spain

Baxter Spain celebrated World PI Week with an innovative internal event to raise awareness of PI. For this event, the team developed an excellent voice over using the voices of two employees´ children. This voice over was sent to all employees’ voice mail so that they could hear it upon arrival at the office. The message explained in simple terms what PI is and why it is important to detect it early. It also announced that employees would receive more information and encouraged them to share it with friends and family to ‘fight’ PI. Printed leaflets were distributed to all the Baxter employees in Spain (Madrid, Valencia, Sabiñánigo) and posters of ‘the 10 warning signs’ were posted on notice boards in canteens.

IPOPI Miracle Book

During the last biennial meeting, IPOPI compiled the ‘Miracles’ achieved by the organization’s members in the past year in a ‘Miracle book’ which was afterwards turned into an animation that can be found here https://www.youtube.com/watch?v=kQtsHv0Iy0I