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

Latest News

Logo for SMArtCARE a joint initiative for spinal muscle atrophy

Real-World Data Collection Enables Evaluating the Safety and Effectiveness of Treatments for Spinal Muscular Atrophy

16 August 2023

This exciting initiative combines collecting real-world patient data by neurologists, clinicians and patients to enable clinical research and engagement of spinal muscular atrophy patients receiving treatment.

SMArtCARE is a multi-year joint initiative of neurologists, paediatricians, and patients with spinal muscular atrophy (SMA). Spinal muscular atrophy refers to a group of rare genetic diseases resulting in muscle wastage and weakness. Symptom onset can be seen in both children and adults but the most severe form typically presents in children under 18 months old. Until recent treatments survival past childhood was unusual.

Read More
Childrens tumor foundation logo

Childrens Tumor Foundation Innovative Patient Reported Patient Registry Platform

23 June 2023

The NF registry is a one of a kind project, where the OpenApp team worked in collaboration with CTF to develop and support a platform that meets their requirements, as a secure and effective tool to empower NF patients and their caregivers. A dedicated registry is the most efficient way to raise awareness/advocate for NF, expand the NF community, and connect to help end NF.

Read More
Software Maintenance

Why You Need A Software Maintenance Management Plan

1 June 2023

Combining the development efforts and the ongoing maintenance of your software is key to ensuring that you have a robust and constantly improving and evolving solution.

Having a software maintenance plan is just as important as the initial development. Professionally managed maintenance allows for the continual improvement and adaptation to changing business needs and technological advancements.

Read More

IQVIA (NYSE:IQV) is a leading global provider of advanced analytics, technology solutions and contract research services to the life sciences industry dedicated to delivering actionable insights. Learn more at www.iqvia.com.

OA_iso27001_email_logo

EMAIL

PHONE

Irish Number:

+353 (1) 872 9331

US Number:

+1 (914) 455-0216

Copyright © 2024 | Privacy Policy

OpenApplications Consulting Ltd. Registered in Ireland No. 355595