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

The Right People in the Right Place

21 June 2022

Geospatial Needs Analysis = Right Service In The Right Place Historically, new mental health staff were hired on a national basis and assigned to their nearby Community Healthcare Organization (or CHOs). While additional resources were welcome, this approach ignored community need in regards to the right services provided by the…

Read More

OpenApp Celebrates 20th Anniversary

23 May 2022

OpenApp Celebrates 20th Anniversary OpenApp is delighted to announce: we’ve turned 20! From starting with a focus on open source software in Ireland and the EU, to the global expansion into patient registries to support patient advocacy, disease research, and treatment efficacy research, we’ve greatly expanded our impact on healthcare…

Read More

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

ADDRESS

Avoca House,

189-193 Parnell Street,

Ireland.

D01 H578

 

 

EMAIL

PHONE

Irish Number:

+353 (1) 872 9331

US Number:

+1 (914) 455-0216

Combining public and bespoke datasets with accessible geospatial data visualisation reveals hidden patterns. https://www.openapp.ie/the-right-people-in-the-right-place/

OpenApp are delighted to announce that we will be attending the 11th ECRD conference, the largest patient-led rare disease conference. We hope to see you there!#ecrd2022

Considering a registry? But struggling with where to start and what to consider? Here's an article penned by OpenApp's CEO and Head of Business Development that sheds light on the common misconceptions about starting a registry:http://bit.ly/Myths-Facts

Load More...

Copyright © 2021 OpenApplications All rights reserved.

OpenApplications Consulting Ltd. Registered in Ireland No. 355595