ADVOCACY

OIFE AT EFPIA PATIENT THINK TANK

November 22nd we had the great pleasure of being invited as observers to the hybrid meeting of the Patient Think Tank of European Federation of Pharmaceutical Industries and Associations (EFPIA). We learned about the work of other European federations, hurdles and opportunities for how patient organizations can work with industry, medicine shortages and patient engagement…

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ADVOCACY

Get to know EUCAPA!

The project EUCAPA aims at providing patients, and patient experts, with the adequate knowledge and skills to effectively participate in the Health Technology Assessment (HTA) process. Their courses are designed to empower participants to advocate for themselves and make their voices heard. This will be needed when future treatments for OI comes up for approval…

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EUCAPA logoADVOCACY

EUCAPA – more Patient involvement

EURORDIS and partners have launched a major project to empower patient involvement in Health Technology Assessments: European Capacity Building for Patients (EUCAPA). EUCAPA is designed to train patients and their representatives in Health Technology Assessment (HTA) – the multidisciplinary and systematic process that evaluates the added value of a health technology in comparison to other…

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OIFE

OIFE Leadership Meeting 2023

On January 23rd the member organizations of OIFE were invited to the OIFE Leadership Meeting 2023. The purpose of the meeting was to inform the organizations about events and activities going on in the OIFE. The agenda included the following topics: News from OIFE incl. clinical trials Launch of OIF & OIFE pain survey EuRR-Bone…

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ADVOCACY

EUnetHA Stakeholder Meeting

The EUnetHTA was established to create an effective and sustainable network for health technology assessment (HTA) across Europe. EUnetHTA supports collaboration between European HTA organisations that brings value at the European, national, and regional level through: The facilitation of efficient HTA resource use. The creation of a sustainable system of HTA knowledge sharing. The promotion…

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ADVOCACY

OIFE at Council of Federations meeting

November 9th and 10th OIFE was represented by Ingunn Westerheim at the Council of Federations (CEF) meeting of EURORDIS – the European umbrella organization for rare conditions. The socalled CEF is a forum where umbrella organizations and federations for rare conditions in Europe come together to learn about news in the European rare disease field…

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EDUCATIONAL

Why measure quality of life and how?

On September 30th representatives from the OIFE attended a very informative webinar, which explored how the importance of Quality of Life measures is expanding, and the ways patient groups can contribute to the development of disease specific measures. The webinar was organized by the foundation Findacure and the company HealX  and explored the ways to…

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CONFERENCES

Networking in Brussels

OIFE had several representatives in Brussels attending the 3rd EURORDIS Multi-Stakeholder Symposium on Improving Patients’ Access to Rare Disease Therapies (https://www.eurordis.org/3rd-access-symposium) in February 2019. During the conference there were also opportunities to network. Here with representatives from Open App, Bindeweefsel.Be and Mereo. What was interesting to know? Our Honorary Member Taco van Welzenis gives an…

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