Last week the Client Engagement team and MD Con Hennessy attended World Orphan Drug Congress in Barcelona, Spain.

21.11.2019

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Now in its 10th year, WODC has become one of the largest and well-established events on rare diseases and orphan drugs within Europe, catering for patient advocacy groups, regulators, and industry from across the continent.

Con Hennessy, our MD was invited to give a talk about “Ingredients for a Successful International Registry” on Day two of the Congress.

The first day of the conference passed by in a blur of activity. As this was our first year exhibiting, it enabled us to have lots of conversations with new friends and virtual friends which we know from Twitter.

So many people stopped by our stand, attracted by our new colours and messaging. It was great to be able to share with individuals and organisations our work on patient registries, clinical registries and pharma-sponsored registries. We gave demonstrations of our software so people could really see for themselves how robust our platform truly is.

(If you missed a demonstration and would like to see it for yourself, please get in touch with us).

Day two began like day one - busy with conversations. Only on Day 2, Con took to the stage where he outlined three key areas to get started when ‘Creating a Successful International Registry’.

He began with “Registries are patient stories translated into useful data” and spoke about having a vision of your registry, getting stakeholders involved right through to developing and sustaining a registry.

Over all, we had a super time at the Congress. We met old friends and made new ones.

If we didn’t get a chance to meet, please do not hesitate in contacting us. We’d love to hear from you.

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Avoca House,

189-193 Parnell Street,

Ireland.

D01 H578

 

 

Back to in-person events, we are delighted to be face to face and learning from thought leaders across the Irish healthcare ecosystem at the Future Health Summit over the next 2 days! #FHsummit2022 https://www.futurehealthsummit.com/

A standout first session today at the #RareDiseaseSummit2022 with Amanda Moore from @angelman and @ellabalasa1, CF advocate.

There are clearly many opportunities, as well as challenges, in investing in partnerships between patient orgs and industry. #RareDisease #registry

We are delighted to be virtually attending the Rare Disease Innovation & Partnering Summit 2022!

Connect with @ConHennessy on the summit platform and learn how we support our patient organisation and industry clients in creating stronger partnerships!
https://informaconnect.com/rare-disease-summit/

OpenApp are pleased to announce the NF Registry by Children’s Tumour Foundation (CTF) is now live in four additional languages: French, Italian, Portuguese and Spanish. Learn more: https://bit.ly/3IF8fLn @ChildrensTumor #patientregistry

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