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Monday, 13 May 2013 14:07 |
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Delegates at the recent Rare Disorder Without Borders event may remember Jamie O'Brien a 22 year old student from Louth who suffers from the incredibly rare disease, Ehler-Danlos Syndrome Type 3. Jamie along with others who have rare conditions featured in the Patients Perspective video at the conference and articulated the need for greater cross border collaboration between health services in the EU.
On the 23rd April, Jamie told TV3's Ireland AM of his plight and was joined by IPPOSI CEO Eibhlin Mulroe. Since this interview was broadcast, Jamie O'Brien has received the good news that his local HSE will facilitate his initial treatment in the UK. To view the interview from the channel's 3Player http://www.tv3.ie/3player/show/184/61868/0/Ireland-AM . |
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Monday, 13 May 2013 13:59 |
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IPPOSI 2013 Roundtable Meeting: A Focus on Patient Compliance & Adherence in 2013
27th June 2013, European Parliament Information Office, Molesworth Street, Dublin 2.
9.30am - 1pm
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Read more...
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Thursday, 18 April 2013 11:51 |
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 IPPOSI are pleased to announce details of our next IPPOSI Information Day which will takes place on the 3rd of May 2013 at 10am (Registration 9.30am) at European Parliament Information Office, Molesworth Street.
Chris White, Chief Executive of Boardmatch Ireland will be the guest speaker and will address the topic;
‘EVERYTHING YOU NEED TO KNOW TO BECOME A BOARD MEMBER BUT WERE TOO AFRAID TO ASK’
IPPOSI members are invited to attend this event which is tailored towards prospective board members of your organisation, new board members and existing board members looking to strengthen their role. There is no charge for IPPOSI members to attend this event but registration is required.
Register by email to
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
or telephone 01-4790552 |
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Thursday, 18 April 2013 00:00 |
 Due to the pending sale of our previous building, IPPOSI has moved offices and would like members to note and save our new contact details .
NEW PHONE NUMBER
01 4790552
NEW ADDRESS
Camden Business Centre,
12 Camden Row, Dublin 8
Our email and website details remain
the same.
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Thursday, 21 March 2013 14:15 |
 On the 21st March, an EUPATI National Liaison Team Workshop took place in Barcelona. The aim of this event was to gather National Liaison Team (NLT) representatives or potential NLT representatives so that they could be updated on the EUPATI development, exchange experiences, gain further knowledge about the goal of the EUPATI National Platforms and how they function.
IPPOSI as a consortium partner was represented by CEO Eibhlin Mulroe, Taskforce Leader for Work Package Two (WP2) and members of the Irish NLT; Sinead Duffy of Bayer, Peter Kelly of Chronic Pain Ireland and Siobhan Gaynor of MMI. National Liaison Teams are the temporary task forces of one representative of each stakeholder group (patients, industry, academia) which will work out the country-specific approach of how best to implement the "EUPATI National Platform" in their respective country. The ENPs will help EUPATI to its’ objectives on a national basis, to raise pan-European programme awareness, disseminate information in national media, and identify future topics of national interest
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Tuesday, 19 March 2013 14:11 |
An Easy Guide to Rare Diseases has been produced to increase awareness about the challenges of living with a rare disease and to highlight the priorities that need to be included in the forthcoming National Plan for Rare Diseases (NPRD) in Ireland.
Launched by Minister Alex White on Rare disease Day 2013, it aims to explain what a rare disease is; to highlight the challenge of living with a rare disease in Ireland through patient profiles; to Identify priorities that should be included in the National Plan for Rare Diseases in Ireland and to contribute to the development of a National Clinical Programme on rare diseases in Ireland
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