| From the Chairperson's desk... |
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Dear Friends,
Spring is in the air! And with it comes a new year filled with inspiration and many new projects! 2015 started at full speed for IPOPI first with the excellent feedback received after the publication just before Christmas of the “PID Principles of Care” led by IPOPI and then with the organisation of an excellent event held in collaboration with the Care-for-Rare Foundation in Bangkok, Thailand, where for the first time PID experts from South East Asia met together to discuss the state of PID care in the region. Over 100 participants attended the event and countries in attendance included Thailand, Malaysia, Vietnam, Singapore, the Philippines and Indonesia. This meeting allowed experts from different countries to look together at the future of PID care in the region. A Call for Action, endorsed by the Minister of Health in Thailand, was started and most importantly a decision by the doctors was taken to launch a South East Asian society of PID experts- SEA-PID, comparable to ASID, ESID and LASID. IPOPI is planning additional patients-doctors meetings in the region with a view to launch new national patient organisations.
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| IPIC2015 - Call for abstracts |
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The IPIC2015 Organising and Scientific Committees invite interested doctors to submit an abstract for poster presentation. In this second edition of the congress, the presenters of the 3 best posters will each get a 5 minute timeslot in the Congress Oral Presentation session on Friday 6 November 2015. The winners of the 3 best posters will also be awarded the following awards: 1000€ (1st place), 750€ (2nd place) or 500€ (3rd place).
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| World PI Week coming your way |
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The 2015 edition of World Primary Immunodeficiencies Week will continue to explore the subject TEST! DIAGNOSE! TREAT! – Turning hope into action which highlights the key priorities for the PID community.
As in previous years IPOPI will be collaborating and providing support to its NMOs for their participation in WPIW 2015 and to ensure national implementation of the campaign.
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| PID moving forward in South East Asia |
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IPOPI in collaboration with the Care-for-Rare Foundation, co-organised the “First Care-for-Rare European-South East Asian PID Meeting – from Bench to Bedside” in Bangkok, Thailand on 26 January 2015. The meeting was endorsed by Thailand’s Minister for Health, His Excellency Mr. Rajata Rajatanavin, and attended by over 100 PID doctors and stakeholders.
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| Eurordis 2015 Black Pearl Gala Dinner |
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| Eurordis, IPOPI, EHC and CSL Behring representatives at the Gala Dinnner |
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The Black Pearl Gala dinner aims at bringing together key opinion leaders, patients’ advocates and all rare disease stakeholders to celebrate the achievements and to promote the work undertaken on behalf of the rare disease community. This fundraising event enables Eurordis to implement many of its programmes.
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| Rare Disease Day conference |
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| Jose Drabwell and Leire Solis at the meeting |
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Jose Drabwell, Chairperson of IPOPI, and Leire Solis, Health Policy and Advocacy Manager, attended the Rare Disease Day conference organised by Eurordis on 24 February 2015 in Brussels. This year’s theme, Living with a Rare Disease, aimed at recognising all those whose daily life is affected by a rare disease, including patients themselves, but also family members, carers and healthcare professionals.
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| IPOPI patient testimonials videos are here! |
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IPOPI released earlier this month its first set of patient testimonial videos on the benefits of early diagnosis and treatment for Primary Immunodeficiencies (PIDs). Jose Drabwell, IPOPI President, who lives with Common Variable Immunodeficiency (CVID) was the first to be featured with a very positive message followed by other persons living with different types of PID, parents who shared their experience with the diagnosis of their children and physicians who provided the medical perspective on the importance of early diagnosis and treatment.
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IPOPI is proud to announce the launch of a new website section dedicated to newborn screening for Severe Combined Immunodeficiencies (NBS for SCID). This new page compiles IPOPI advocacy activities for SCID NBS, the latest news on SCID newborn screening and our NMOs’ campaigns to ensure that this paediatric emergency is included in the national newborn screening panels throughout the world.
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| Norovirus and Immunodeficiency |
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| Dr David Lowe (Royal Free Hospital, London, UK) |
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In this edition of e-News, Dr David Lowe (Royal Free Hospital, London, UK) who is a specialist in primary immunodeficiency (PID) and infectious diseases, talks to us about novovirus and PID. This article only aims to provide some basic information on novovirus including how it may affect some PID patients and tips on preventive measures.
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| IPOPI attends the International Plasma Protein Congress |
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Mrs Jose Drabwell, IPOPI President, the IPOPI Board and Ms. Leire Solís IPOPI Health Policy and Advocacy Manager attended the 2015 International Plasma Protein Congress. This year’s congress was held in Rome on 10 and 11 March 2015.
These year’s session focussed on many interesting topics including: personalising treatments for better fit patients’ needs, the challenges and opportunities patients are facing, access to care and health economics.
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| Update on PLUS Annual General Meeting |
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The Platform of Plasma Protein Users (PLUS), the group uniting patient groups using plasma-derived medicines, held its annual meeting on 11 March 2015 in Rome. Several items were discussed during this meeting, amongst which European legislation on Blood and blood products, which was closely followed by PLUS members.
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| New series of IPOPI Patient Information Leaflets |
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A new series of IPOPI patient information leaflets has just been released! Five new interesting leaflets providing helpful information and guidance for patients, their families and other interested stakeholders of the Primary Immunodeficiencies (PID) community are now available.
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| Ukraine is the newest IPOPI member! |
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Rare Immune Diseases (RID) from Ukraine is IPOPI’s 53rd National Member Organisation. RID was in the making for five long years since their first contact with IPOPI back in 2010 in the Biennial Meeting in Berlin.
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| IPOPI attends two EMA informative sessions |
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On the 15th December a workshop took place at the EMA on the development pathways for Advanced Therapy Medicinal Products (ATMP), to highlight the future approaches to targeted medicines. Although a large number of ATMP research projects are registered in the European Union Clinical Trials Register (EUCT), about 250 in 2010, only 4 products have received authorisation.
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| Prof Alain Fischer and Dr Theodore Friedmann awarded |
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| Prof Alain Fischer © 2015 AFP |
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In the field of “Medical Science and Medicinal Science,” Dr. Theodore Friedmann of the United States and Pr. Alain Fischer of France were selected for the “proposal of the concept of gene therapy and its clinical applications.” The Japan Prize is awarded annually to scientists and engineers from around the world who have made significant contributions to the advancement of science and technology, thereby furthering the cause of peace and prosperity of humanity.
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| Norway approves pilot project for SCID newborn screening |
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The SCID newborn screening pilot project has been approved by the Norwegian Ministry of Health and will be launched March 16th. This is a very encouraging development and they aim to screen 14,000 newborns in Norway for a year and then, expand it to 60,000 newborns throughout the country in a full-scale programme.
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| AEDIP fosters the creation of 2 new immunology reference units |
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A year of dialogue has borne its fruits and patients with primary immunodeficiencies in the region of Aragón will be able to benefit from two reference units newly created in Zaragoza. This is a result of the efforts of AEDIP, the Spanish PID group, and their strong support to ensure that patients in all regions in Spain are able to have a reference centre in their region.
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| IPSPI putting PIDs in the political agenda |
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IPSPI participated and presented at the I-ORD organised meeting organised by Pharmexcil and Indian Pharmacological Society held on 18-19 September, 2014 at Hyatt Regency, Hyderabad. Rubby Chawla, Founder and President of IPSPI and Panelist on the topic Government initiatives on rare diseases and orphan drugs was elected to the Board of Team India for Orphan Diseases/Drugs TIODD – Pharmexcil/ IPS (Indian Pharmacological Society).
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| Immune Deficiency Foundation Hosts National Conference |
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New Orleans: June 25-27, 2015
The Immune Deficiency Foundation (IDF) is preparing for the IDF 2015 National Conference, the world’s largest gathering of individuals and families living with primary immunodeficiency, which will be held June 25-27, 2015 in New Orleans, Louisiana, USA.
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Over the last few months of last year we attended many regional PID patient meetings, where we had the pleasure of meeting many patients to tell them about the work we do, as well as the chance to talk to medical professionals about the important issues affecting patients.
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| LASID 2015 travels to Buenos Aires |
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The Latin American Society for Immunodeficiencies (LASID), the Argentinean Society for Immunology (SAI), and the French Society for Immunology (SFI) invite you for the V LASID congress to be held in Buenos Aires (Argentina), 18th - 21st of November 2015.
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| 4th ASID Congress in Algiers |
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The 4th African Society for Immunodefiencies (ASID) Congress is rapidly approaching! The next ASID Meeting will be held in Algiers, 29th-31st of May 2015.
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| IPFA - Upcoming Plasma Products Meetings |
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IPFA, the international Plasma Fractionation Association has three exciting upcoming events that we are pleased to announce. These event foster international discussion of topics relevant to the field of plasma and plasma products.
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| German PID patient organisation dsai e.V. |
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In Germany an estimated number of 100.000 people are currently suffering from primary immunodeficiencies. Six years ago only 700 patients were diagnosed.
With educational and awareness campaigns with hospitals, doctors, partner organisations, pharmaceutical companies and with our dedication, we have contributed to a much higher number around 3.500 diagnosed patients who are now receiving appropriate treatment.
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