So You May Ask Just What Exactly is EUPATI?
The EUPATI website can be found here
Put simply it’s a merge of Public Private Partnership, set out over a 5 year time frame and is fully patient led. 2015 has seen 100 patient representatives enrol on training courses across Europe, encouraging and assisting patients to become expert advocates in their own fields of interest or expertise. These opportunities help develop skills to network or become a main contact, to ask well scoped out and thought through question and ensuring that knowledge and skill-base can usefully be handed over to other individuals.
Attending the Dublin event I heard from a number of participants on course, each highlighting their own unique journeys.
Sharon Thompson from Donegal spoke very honestly about her role as a mother wanting to be the voice for others who didn't know how.
Pete Lack Childhood Cancer, Switzerland, told the audience how he plans to use his knowledge in his own county.
Dimitrios Athanasiou’s son suffers from Duchenne Muscular Dystrophy and his story was a very personal crusade to be the voice for sufferers in Greece.
EUPATI Toolbox is a unique source of information giving Patients skills, advice and information.
EUPATI vision for 2020 is to educate patients to be active in drug development process.
On the day in Dublin we were separated into groups, and sessions were conducted to discuss how EUPATI could work in each county.
The benefits of having a National Platform are
- Big advantages in making it so much easier to talk to each representative around the one table. No-one wants to tackle these problems alone.
- Networks and strategies are already in place to help more patients groups get involved.
- What might be some of the strategic priorities for National Platforms?
- Decide important topics.
- Take the tools that benefit your own specific country.
- Every Patient Organisation and Patients will benefit from using the EUPATI Toolbox.
- How can we prepare communities to use the toolbox?
- Telling government bodies that EUPATI representatives exist.
- Get funding to hold events to retrain more patients.
- To sign regularities.
Success Comes From Making People Aware of Each Other
I found it to be a a very informative conference encouraging small patient groups to come together to form one large national platform and tackle issues such as drug developments and getting patients awareness about involvement in clinical trials.
There were in total 186 different delegates
Do we want to be involved? How do we get involved?
I believe there are EUPATI representatives already in England inc Simon Denegri (INVOLVE) who was very keen to push National Platform in the UK and Roisin Adams (NCPE) in Ireland
Catherine Donahue - National Contact Person for Ireland. She's working hard for the patients in Ireland and maybe able to help with E112 issues that our OI kids face.
Dr Paul Robinson - Executive Director, Global Centre for science, Medicine and Patient Representative perspectives MSD, Hertford Road Hoddesdon
This drugs company make Alendonate (tablet form) Bisphosnoate for mild cases of OI.
See full reports and videos here
By Trustee Jacky Boyd