Great news for Rare Diseases with the announcement that the European Joint Programme on Rare Diseases (EJP RD) will launch on 1 January 2019. This is a new research partnership between member states and the European Commission, working with a budget of over €100 million, that will aim to make sure that new treatments and diagnostic tools reach those who need them the most. IPPOSI members may be interested to know that there is an upcoming research call under the EJP RD for transnational research projects to accelerate diagnosis and/or explore disease progression and mechanisms of rare diseases. All the details are available here, the call opens this week on December 14th 2018.
Rare Disease Day & Rare Diseases News
As ever, Rare Disease Day will be celebrated on February 28th, so mark that date in your diary. Shortly IPPOSI and the other organisations involved in organising the Irish Rare Disease Day will announce details of venue, theme and speakers. Meanwhile, IPPOSI was part of a delegation (with MRCG & Rare Diseases Ireland) presenting to the Joint Oireachtas Health Committee on the topic of Evaluating Orphan Drugs. You can find the video of this session here, or to read the transcript, go here. You can also read Irish Times coverage of the hearing here.
2018 has been a year of continued progress for the EUPATI National Platform Network with forward momentum being made in many areas. We saw the EUPATI toolbox reach 1 million unique users, and the launch of the EUPATI toolbox in Danish. EUPATI Finland launched as a new National Platform (ENP) and new funding provided to the ENP Network in the form of WP4 of the EFO-EUPATI project, a workpackage led by IPPOSI.
Patient Education Programme
Application assessments for the 2019 Patient Education Programme are almost complete, we were delighted to see over 50 people applying for approximately 25 places. A huge thank-you to everyone who applied, and also to our team of assessors, for donating their time and energy. We are excited about a whole new cohort of students coming together for the first time in just over a month!
IPPOSI recently published the Outcome Report arising from the Patient-Centred Outcome Measures conference, which took place in October. The report is available here.
Science Foundation Ireland
This Friday (December 14th), Science Foundation Ireland will host a 45-minute webinar (register here) to provide an update on its strategy development for 2020-2025, following six months of consultation. The webinar will cover what the consultation process looked like, who was engaged with, and what are the key topics that the consultation process discussed, among other items.
IPPOSI is a proud supporter of the HPV Alliance, led by the Irish Cancer Society and others. IPPOSI welcomes the recent news that the vaccine will be offered to boys from September 2019, the start of the school year. More here.
Theme for 2019: Patient Data
The IPPOSI Annual Theme for 2019 will be Patient Data. We are looking forward to sharing our plans on this topic with you early in the new year, but in the meantime you can get a flavour of our intentions by watching this video, which also includes a primer on Patient Centred Outcome Measures, and the latest facts and figures about IPPOSI itself.