The webinar will cover major clinical manifestations and evaluation of the novel multisystem inflammatory syndrome in children that is related to SARS-CoV-2 infection and possible differential diagnoses.
As you may already know, ECRD 2020 will now take place exclusively online, on 14-15 May using an interactive online platform. It is now possible for more people than ever to register to participate online from the safety and comfort of your own home, wherever you are in the world. In line with moving online, registration fees have been reduced to make it easier to connect with the rare disease community from home. If you had already registered via the old registration form for the conference in Stockholm, you do not need to re-register. Once registered, you will be able to participate in interactive sessions led by over 100 industry experts built around six themes, including Theme 3: ‘Share, Care, Cure: Transforming care for rare diseases by 2030’, which has a particular focus on the role of ERNs. The Conference is an unrivalled opportunity to network and exchange invaluable knowledge with all stakeholders in the rare disease community from over 50 countries around the world – patient representatives, policy makers, researchers, clinicians, industry representatives, payers and regulators. Despite the many challenges we are all currently facing, by joining the global rare disease community at ECRD 2020 you will help to shape the next decade of policy for people living with a rare disease! Kind regards, ECRD Secretariat
In the midst of the CORONA pandemic we want to inform
you that there are 2 separate surveys to report Covid19 infected patients with
underlying rheumatological or immunological conditions. The first one was setup
by ESID and was reported at the RITA website on march 22. It is accessible by https://www.surveymonkey.com/r/67RBPNZ?
The second survey is specifically for patients with
rheumatic conditions and is called COVID-19 European Patient Registry, written by
the Global Rheumatology Alliance. The latter
registry is aiming at patients and is open for adults as well as pediatric
patients. So far, we have 2,146 adults and 374 children in the Registry, and have
had 14 adults and 1 child diagnosed with COVID-19. It
can be accessed at www.jarproject.org/covid
In light of the ongoing COVID-19 outbreak IPOPI, ESID, INGID, APSID, ARAPID, ASID, LASID & SEAPID is releasing a joint statement on the current epidemics of the new coronavirus (see attachment). We understand that the ongoing situation raises many questions for you and your members and we hope that this statement will answer many of them.
The EU level Call to Action on Newborn Screening for Rare Diseases launched by IPOPI, the European Society for Immunodeficiencies (ESID) and the International Society for Neonatal Screening (ISNS) last December at the IPOPI 13th EU PID Forum is now available for consultation.
The 13th IPOPI EU PID Forum was dedicated to “Newborn screening for rare diseases – A PID perspective” and set the scene for a strong political debate on newborn screening for severe combined immunodeficiencies as well as other severe forms of PIDs (such as complete Di George syndrome). The Call to action was supported by a high number of MEPs including those present at the Forum: Dr Manuel Pizarro (Social-Democrats, Portugal), Ms Tilly Metz (Greens, Luxembourg), Ms Irena Joveva (Renew Europe, Slovenia), Ms Sirpa Pietikainen (European People’s Party, Finland) and Dr Tudor Ciuhodaru MEP (Social-Democrats, Romania).
The Call to Action stresses the need for the development and implementation of overarching guidelines in the field of newborn screening for rare diseases and the creation of a European newborn screening standing committee was observed. This would facilitate the exchange of best practices and recommendations on newborn screening and allow national decision-makers to better access information and solid evidence from other Member States.
Happy to announce the 2019 HPO towards immune mediated disorders in Vienna on 17-18th October – Supported by ESID and ERN RITA and organized by LBI-RUD. If interested please get in contact with office (at) rud.lbg.ac.at