IPOPI joins the rest of the primary immunodeficiency (PID) community in celebrating Rare Disease day today! This year's campaign focuses on the importance of increasing research in rare diseases.
Glenis Willmott MEP published an article on 21 February on the potential impact of Brexit on rare disease research and people suffering with less prevalent disorders. Ms Wilmott references rare diseases with particular emphasis on SCID and praises the work developed by GOSH on clinical trials for SCID.
European Member States approved on December 15 the proposal for a Rare Immunodeficiency, Autoinflammatory and Autoimmune (RITA) European Reference Network. IPOPI was one of the organisations collaborating since the inception on this proposal which, unites under the same network specialised centres in Europe dedicated to primary immunodeficiencies (PIDs) and other autoinflammatory and autoimmune disorders.
The New Zealand Health Minister, Jonathan Coleman, announced on 7 November 2016 the implementation of newborn screening for severe combined immunodeficiencies (SCID) by mid-2017.
IPOPI Biennial Meetings are unique events for our National Member Organisations (NMOs) and provide great opportunities for interaction and learning. The recent Biennial meeting was no exception! It was well attended by 100 participants and featured a skills building programme tailored specifically for our NMOs, medical lectures for patients, updates on the immunoglobulin replacement therapy environment provided by industry representatives and more!
IPOPI’s 2015 Review of Activities and Achievements is out and you can now read it online!
We hope you will enjoy reading about one of the most important years for IPOPI yet.
GlaxoSmithKline (GSK), Fondazione Telethon and Ospedale San Raffaele (OSR) recently announced that the European Commission approved Strimvelis, the first ex-vivo stem cell gene therapy for ADA-SCID
IPIC2015 was a great success with 700 participants from over 70 countries in attendance! The second International Primary Immunodeficiencies Congress was held in the beautiful city of Budapest, Hungary.
Over 60 patient representatives from 30 countries are gathering this afternoon in Madrid, Spain, for the inauguration of Rare Diseases International (RDI) and to adopt a joint declaration to advocate for rare diseases as an international public health priority.
The European Commission (EC) published in April a report on ‘An EU-wide overview of the market of blood, blood components and plasma derivatives focusing on their availability for patients’.
The Council of Europe adopted an important Resolution about Therapies for Primary Immunodeficiencies. Very exciting news that will help our members' advocacy efforts in this year's World Primary Immunodeficiencies Week and beyond!
IPOPI is releasing today its first patient testimonial video. Jose Drabwell, Common Variable Immunodeficiency (CVID) patient and IPOPI President is the first one up with a very positive message.
Over the last two years, IPOPI combined its efforts with a worldwide multi-disciplinary team of specialists to develop the “Primary Immunodeficiencies Principles of Care”. The paper outlines the key necessary elements and policies that should be in place to provide a "gold standard" framework of diagnosis and care for primary immunodeficiencies.
The 2013 IPOPI Review of Activities and Achievements is out and available online!
In this report find out about IPOPI's activities and achievements during the past year. 2013 was a historical for IPOPI and for the global PID community with great initiatives taking place in all regions of the world.
The 4th edition of World Primary Immunodefiencies Week (WPIW) starts today with the theme “Test! Diagnose! Treat!”. From April 22nd to the 29th join us in a unique global momentum to raise awareness about Primary Immunodeficiencies (PIDs).
A significant step towards the new Clinical Trials legislation was taken yesterday in the European decision-making process as it was formerly adopted by the Plenary of the European Parliament on 2 April 2014. Ms. Glenis Willmott MEP, the Parliament rapporteur for this dossier, highlighted that this new legislation would allow for patients with rare diseases to receive new treatments faster. In that sense, the newly adopted text ensures special provisions for the evaluation of medicines intended for rare diseases and shorten the timelines for the assessment of the trial. One of the more discussed provisions in the future legislation was the transparency of the clinical trials data and its degree of availability to researchers and the general public. In the end, the text includes strong wording on transparency of clinical trials data establishing a publicly available data base which is to contain all clinical trials data for clinical trials in the European Union. Additional measures such as the submission of a single dossier for a trial due to take place in several EU countries is also considered to favour the development of clinical trials.
The new legislation should be finally adopted by the Council of Ministers in June 2014.
e-News is a quarterly electronic newsletter covering the latest activities and news items from IPOPI as well as other developments from the international PID community.
The Winter 2013 edition of IPOPI's e-News has been released and can be accessed here. For information on how to subscribe to e-News, see our e-News webpage.
The 2012 PLUS Dublin Consensus Statement on optimised supply of plasma-derived medicinal products was recently published in Blood Transfusion.
Following the PLUS 2013 Consensus Stakeholders Conference held in Estoril, Portugal on 5-6 September 2013, PLUS submitted a letter to Alliance of Blood Operators (ABO) Risk-Based Decision Making Project Stakeholders Liaison Committee. The Open Letter outlines key consensus principles agreed at the Consensus Conference with a view to encourage the integration of the views of the PLUS consensus platform stakeholders into ABO’s RBDM framework project. The open letter can be viewed here.
IPOPI Bob LeBien Asian Development Plan
IPOPI and the Malaysian Society of Allergy and Immunology (MSAI) will co-organize the 1ST Malaysian PID National Workshop in Kuala Lumpur on 27 October. The workshop is part of the official programme of the 6th edition of the National Clinical Immunology Symposium (NACLIS), on 26 and 27 of October, which focuses on “Creating Awareness of PID in South East Asia and Beyond”. This initiative will provide a great opportunity to increase the visibility of PIDs in Malaysia and aims to stimulate the launch of a national PID patient group.
IPOPI is pleased to announce that the next Congress of the Asia Pacific Association of Pediatric Allergy, Respirology and Immunology (APAPARI 2013) will be held in Bangkok, Thailand on October 2-4. The meeting marks the 15th anniversary of APAPARI congress since it first started in Bangkok in 1998. This year, IPOPI will hold the First Thai PID Patients Meeting in conjunction with the congress and organised with APAPARI's support.
For more information on the APAPARI 2013 Congress please visit the congress website here.
Baxter and Halozyme Therapeutics announced yesterday that they have received a marketing authorization from the European Commission for HyQvia as a treatment for adults with primary and secondary immunodeficiencies. This follows a positive opinion for the product from the European Medicines Agency’s Committee for Medicinal Products for Human Use earlier this year.
The European Union has introduced a new process to label medicines that are being monitored particularly closely by regulatory authorities. These medicines are described as being under 'additional monitoring'. Medicines under additional monitoring have a black inverted triangle displayed in their package leaflet and in the information for healthcare professionals called the summary of product characteristics, together with a short sentence explaining what the triangle means. A medecines is placed on this list when for example it has been introduced recently on the market, or if it requires special measures to monitor adverse reactions, or if post-marketing authorisation safety studies were requested by the EMA.
Today marks the launch of the 3rd World Primary Immunodeficiencies Week (WPIW) which will culminate on the World Immunology Day, 29th April. The Week is a global action organised by the primary immunodeficiency (PID) community fighting for global awareness on this increasingly important group of diseases.
On April 17th our friends from the Haemophilia community celebrate World Haemophilia Day. IPOPI supports World Haemophilia Day which provides a unique momentum in the year to raise awareness of haemophilia and the fact that most people with haemophilia and other bleeding disorders do not receive adequate diagnosis, treatment and management for their conditions.
Rare diseases without borders is the slogan of the 2013 International Rare Diseases Day celebrated today. The main objective of Rare Disease Day is to raise awareness about rare diseases, the challenges encountered by those affected by these disorders, and the inequalities that rare disease patients face every day.
Rare Diseases Day 2013 will be celebrated on 28 February 2013. The official Rare Disease Day 2013 video is now available. The video takes the viewer on a magical journey to demonstrate the urgent need for global cooperation in the field of rare diseases. It is inspired from the Rare Disease Day 2013 slogan “Rare Disorders without Borders” and captures the need for the international rare disease community to work together to find solutions. Check out the video here!
The Oral Question is supported by the EU Parliament committee responsible for all Health matters (ENVI) and follows IPOPI EU Advocacy campaign for SCID Newborn Screening.
The European Commission recently published a report on the contributions received for the consultation on chronic diseases in which IPOPI took part.
The aim of the Consultation was to gather stakeholders information and provide a basis for a potential EU policy on chronic diseases. Later in 2013 a Joint Action on Chronic Diseases will be carried out by the Commission in cooperation with one or more Member States or with competent authorities.
IPOPI is pleased to announce the publication of three new patient information leaflets comprising helpful information and guidance for patients, their families and other interested stakeholders of the Primary Immunodeficiencies (PID) community.
The European Organisation for Rare Diseases (EURORDIS), the National Organization for Rare Disorders (NORD) and the Canadian Organization for Rare Disorders (CORD) have released a joint declaration on common principles regarding Rare Disease Patient Registries.
The African Society for Immunodeficiencies (ASID) will hold its third Congress in Sun City, South Africa on 5-9 June 2013. The Congress whose overall theme is "Hope for Africa" will feature an esteemed international and local faculty of speakers and offer pre-conference workshops and a range of thematic sessions including on allergology, immunodeficiency diseases, paediatric pulmonology, pulmunology and thoracic surgery. For more information on the congress click here.
The IPOPI XIIth Biennal meeting in conjunction with the XVth ESID and Xth INGID took place on 3-6 October in Florence, Italy.
On Wednesday, 26th September the 3rd Primary Immunodeficiency Forum organised by the International Patient Organisation for Primary Immunodefiencies (IPOPI) was held at the European Parliament in Brussels, Belgium. Nessa Childers, MEP, hosted the event. Forum participants included MEPs, industry representatives, EU commission representative, patients’ representatives and leading physicians and researchers.
IPOPI will organize its first congress on the 7th and 8th of November 2013 in Estoril (Lisbon), Portugal.
The European Medicines Agency has recently launched a consultation on their Draft guideline on core SmPC for human normal immunoglobulin for subcutaneous and intramuscular administration.
This new IPOPI statement is intended to provide a summary of IPOPI’s position with regards to the importance of ensuring access for patients living with a primary immunodeficiency (PID) to the best suited immunoglobulin (IG) replacement herapy
The European Commission published today its response to the Parliamentary Question on Health Technology Assessments (HTAs) tabled by Mrs Glenis Willmott
February 29th marked the celebration of 5th Rare Diseases Day. Launched in 2008 and held every year on the last day of February (‘a rare day for rare people’), the event has grown rapidly and successfully over the years.
This year for the first time, Eurordis, the European Organisation for Rare Diseases, organised a ‘Black Pearl’ Gala Dinner event in Brussels which was attended by approximately 200 participants. IPOPI’s Executive Director, Johan Prevot, was privileged to be invited to represent the PID patient community at this important event as well as PLUS, the Platform of Plasma Protein Users, along with Brian O’Mahony from the European Haemophilia Consortium.
In solidarity with the millions of people who live with a rare disease, World PI Week founders are using the occasion of Rare Disease Day to send
A short awareness-raising video clip has recently been released by Eurordis
The European Commission published its work plan for 2012 for the second programme of Community action in the field of health. The work plan sets out the activities to be co-financed from the work plan. To find more information on how to apply for EU co-financing for projects, conferences, joint actions with Member States and operating grants for non-governmental organisations please visit the commission’s dedicated webpage here. The deadline for submission of proposals is 9 March 2012
On December 6, 2011, IPOPI held its second PID Forum at the European Parliament on Health Technology Assessments (HTAs) and Primary Immunodeficiencies. The event was very successful and was hosted by Member of the European Parliament (MEP) Glenis Willmott (UK, PES). It was attended by numerous stakeholders including patient, physician and academia representatives, industry experts, as well as by 9 MEPs from different political parties.
IPOPI’s recently released a co-edited issue of Pharmaceuticals Policy and Law in collaboration with Professor José-Luis Valverde (University of Granada, Spain) looking at Health Technology Assessments (HTAs) and Rare Diseases Therapies.
As part of its PID patient awareness programme, IPOPI organised the first patient awareness NMO pilot workshop in Belgium on 2 July 2011. BOPPI, the Belgian Organisation for Patients with Primary Immunodeficiencies sent five participants to the meeting which was also attended by Prof Meyts. The workshop enabled all participants to share their knowledge about PID, give feedback on the IPOPI patient awareness toolkit and plan concrete awareness raising activities in Belgium.
Grifols, S.A. (GRF.MC) and Talecris Biotherapeutics Holdings Corp. (NASDAQ: TLCR) announced on 1 June 2011 that the U.S. Federal Trade Commission (FTC) has accepted for public comment a Consent Agreement that outlines the conditions necessary for Grifols' acquisition of Talecris to proceed.
The First World Primary Immunodeficiency Week was celebrated across the world from 22-29 April 2011. A range of initiatives and awareness raising events were held in various regions of the world creating a true global movement to increase the recognition of primary immunodeficiencies as an increasingly important group of rare disorders. IPOPI was pleased to be able to support its national member organisations in their national campaigns which were all truly successful. We very much look forward to World PI Week 2012 and invite all stakeholders to join this important campaign. So stay tuned on the IPOPI website and World PI Week website for more news on the upcoming Second World PI Week !
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