OpenApp Delighted to Support Rare Disease Day, 28th February 2015

Rare_Disease_Day

 

We've been working with rare disease patient organisations for some time and are delighted to support Rare Disease Day.

What is Rare Disease Day?

Rare Disease Day takes place on the last day of February each year – the 28th February. It's objective is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

Did you know that over 6,000 different rare diseases have been identified to date, directly affecting the daily life of more than 30 million people in Europe alone?

The complex nature of rare diseases, coupled with limited access to treatment and services, means that family members are often the primary source of solidarity, support and care for their loved ones. The Rare Disease Day 2015 theme Living with a Rare Disease pays tribute to the millions and millions of parents, siblings, grandparents, spouses, aunts, uncles, cousins, and friends whose daily lives are impacted and who are living day-by-day, hand-in-hand with rare disease patients

Hand in Hand, Day by Day

In Europe, there are many initiatives designed to improve daily life: Developing and facilitating access to diagnostics and treatments can change the day-to-day reality for someone with a rare disease. Identifying and improving access to specialised social services for rare diseases enables families to improve the quality of daily life.

We develop rare disease registries and have seen first-hand how registries can make a difference in people's lives and care pathways. Little things can make a huge difference.

Lets All Raise Awareness for Rare Disease Day

Rare Disease Day was started by patient organisations and is patient-led. This is a day that deserves to be acknowledged and we'll certainly be pushing the message out about the need to become more aware of rare diseases. The theme is day by day, hand by hand, so together, anyone who knows anyone with a rare disease is encouraged to share the message.

Filed under: Rare Disease, Clinical Assessment Platform, Rare Disease Registry, Clinical Insight

Latest News

Increasing Patient Communication and Engagement: How Children’s Tumour Foundation (CTF) are reaching more patients Through Multi-Language Functionality

25 March 2022

Increasing Patient Communication and Engagement: How Children’s Tumour Foundation (CTF) are reaching more patients Through Multi-Language Functionality 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. This new enhancement provides access to the registry…

Read More

European Cystic Fibrosis Society Share Their Registry Experience

22 March 2022

European cystic fibrosis society share their registry experience The European Cystic Fibrosis Society Patient Registry (ECFSPR) is one of OpenApp’s more mature registries having first been developed in 2012. It has grown exponentially through the continued work of both the European Cystic Fibrosis Society (ECFS) and OpenApp and currently accommodates…

Read More
image showing an ambulance in the foreground and a coast guard helicopter in the near distance

AeroMedical, Saving Lives With Location Data

21 January 2022

Multi agency toolkit, incident management and location coordination What is AeroMedical? The Aero-Medical module is a custom software application developed by OpenApp which is used by the Health Service Executive (HSE) Aero-Medical Services, the Air Corps and the Irish Coast Guard . It consists of user-interface/screens showing real-time availability of…

Read More

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

Load More...

Copyright © 2021 OpenApplications All rights reserved.

OpenApplications Consulting Ltd. Registered in Ireland No. 355595