The Rare Disease Puzzle: Bringing the Picture to Life

ecrd

 

OpenApp are pleased to be attending the 2014 European Rare Disease Conference, Berlin 8th-10th May.

The fact is that while a disease might be labeled as “rare”, the number of persons in Europe suffering from a rare disease is estimated at over 30 million. Rare diseases do not only affect those diagnosed, but their families, friends, carers and society as a whole. While one rare disease may affect as few as 1 in 50,000 people, rare disease patients collectively comprise 6 to 8 % of the EU population. These statistics do not seem as comforting.

The European Conference on Rare Diseases and Orphan Products is rare. It is the one event where everyone from patients, to policy makers, healthcare professionals, industry, payers, regulators, researchers and academics are given the opportunity to meet, exchange information and ideas and join together in the fight against rare diseases. This event provides a unique platform comprising all rare diseases, across all European nations. With over 100 speakers and countless professionals in attendance, this biennial conference covers the latest research, developments in new treatments and information regarding innovations in health care, social care and support at both the European and national levels.

Why are OpenApp attending?
OpenApp's Clinical Insight platform can allow some of the 4,000 rare diseases to improve their patient monitoring, pharmacovigilance and reporting among their patient cohort.

 

View the conference website: rare-diseases.eu

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ADDRESS

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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