OpenApp Supports Rare Disease Day

Rare_Disease_Day

 

2016 marks the ninth year that the international rare disease community celebrates Rare Disease Day. OpenApp is delighted to support this great initiative.

On Monday, 29 February 2016, people living with or affected by a rare disease, patient organisations, politicians, carers, medical professionals, researchers and industry will come together in solidarity to raise awareness of rare diseases.

The Rare Disease Day 2016 theme ‘Patient Voice’ recognises the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers. Rare Disease Day is organised by Eurordis.

OpenApp is proud to be associated with Eurordis as a Sapphire Member. Eurordis, whose mission is to be the voice of an estimated 30 million people living with a rare disease in Europe, supports patients to make their voice stronger through various initiatives and activities.

As a company, we are empowering rare disease patient groups aswell as promoting scientific and clinical rare disease research through the use of patient registries. We are working on a number of active registry projects for rare diseases including Epidermolysis Bullosa, Dermatology Phototheraphy, Haemophilia, Alpha 1, Alternating Hemiplegia, Tay Sachs, Interstitial Lung Disease, Autism & Bipolar Disorders.

Rare Disease Day amplifies the voice of rare disease patients so that it is heard all over the world.

The Rare Disease Day 2016 slogan ‘Join us in making the voice of rare diseases heard’ appeals to a wider audience, those that are not living with or directly affected by a rare disease, to join the rare disease community in making known the impact of rare diseases. People living with a rare disease and their families are often isolated. The wider community can help to bring them out of this isolation.

George, our business development director, will be in Brussels with Eurordis celebrating Rare Disease Day, on 24th-25th February.

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