Welcome to the IPPOSI newsletter for February 2014
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Dear IPPOSI members,  

Welcome to the July newsletter, I hope you are enjoying the summer! Things continue apace here at IPPOSI, on July 3rd we co-organised the launch of the much anticipated National Rare Disease Plan for Ireland 2014-2018. The launch event in the College of Physicians was extremely well attended so thank you to everyone who came on the day, but particular thanks must go to all those people who have worked so hard for so many years to get the Plan written and published.
The work doesn’t end there. We have to ensure that the provisions of the plan, particularly the National Office for Rare Diseases, are included in the HSE’s Service Plan for 2015. For now however, congratulations to everyone who helped to make this happen. You can see the plan here and media coverage of the Plan’s publications here, here and here.
This month IPPOSI is also very pleased to publish our own Outcomes Report arising from the Annual Roundtable Meeting with the Secretary General of the Department of Health. This year the meeting focused on Health Information, and the contributions of the speakers, and the discussions they triggered have, we hope, been captured in the Outcomes Report. Once again thank you to all of the people who took part.
Elsewhere, and as a member of the HIQA Research Ethics Advisory Group, IPPOSI attended a meeting in Dublin Castle’s George’s Hall titled: ‘Information Session on the Health Information Bill - Research Ethics Approval Framework’.
Looking to the months ahead, we already have a good response for IPPOSI AGM and EUPATI National Platform Meeting which will take place in Dublin Castle on Tuesday the 16th of September 2014. If you haven’t already registered for the event, you can do so by going to Eventbrite online registration here.
I am also pleased to inform you that IPPOSI and UCD ARCH will be hosting a conference called ‘Connected Health & Me: The Patient Perspective’ at the end of November 2014. As you may be aware, we have already issued a ‘Call to members’ about the ‘Health hack’ that will take place during the conference, so you can find more information about that here. In the coming days IPPOSI will circulate an official ‘save the date’ notice, including registration details, once final details for the day have been confirmed.
Finally, IPPOSI has launched our new-look website so be sure to drop by The site will shortly include an updating HTA (Health Technology Assessment) box that links to the NCPE’s online feed. Hopefully that will prove useful to members in the future.  
Enjoy the rest of the summer and I look forward to seeing you soon.
Eibhlín Mulroe 

National Plan

The National Rare Disease Plan for Ireland 2014-2018 is here

HTA Consultation

HIQA is currently running a consultation on guidelines for Retrieval and Interpretation of Economic Evaluations, and on Evaluating Clinical Effectiveness (HTA). You can find more here, the closing date is August 29. 


Annual Report

The 2014 Annual Report for Rare Diseases in Europe is now available. Go here for more details. 



Save the date

The Structured Population and Health-services Research and Education Network is having its first annual conference “Health Research, Policing, and Practice – Creating links for effective collaboration” will take place in RCSI Dublin on January 9th 2015, so save the date.  



This year’s awards will take place on October 9th in the Aviva Stadium. Save the date in your diary and check for registration details. 

Latest news

The EMA has made a step towards more transparency for clinical trials data. You can find more here.


Questionnaire on access

The EURORDIS Access Campaign questionnaire invites anybody living with a rare disease who has experienced difficulties accessing treatment – including medicines, medical devices, surgeries, or medical consultations - to respond to a brief online questionnaire available in 19 European languages. Go here for more details.  



The latest EUROPABIO newsletter is available here



The latest BBMRI-ERIC newsletter can be downloaded here.

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