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…

READ MORE
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…

READ MORE
ADVOCACY

Being a patient representative (ePAG) in ERN BOND

Interview with Rebecca Tvedt Skarberg, member of European Patient Advocacy Group (ePAG) The European Reference Networks (ERNs) are 24 virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on rare diseases that require highly specialised treatment. One of these networks is the European Reference Network for Rare Bone Diseases (ERN-BOND). ERN-BOND has…

READ MORE
ADVOCACY

The European Registry for Rare Bone & Mineral Conditions (EuRR-Bone)

Interview with Natasha Appelman-Dijkstra M.D. Ph.D., Leiden University Medical Center (LUMC), Netherlands Who are you and what is your relationship to OI? I am Natasha Appelman-Dijkstra internist-endocrinologist in Leiden University Medical Center and specialized in Bone and Mineral Disorders and thus treating patients with OI. I have worked in the Leiden University Medical Center (LUMC)…

READ MORE
ADVOCACY

Tell Ursula about OI!

Tell Ursula von der Leyen, the President of the European Commission, YOUR reason why Europe needs to take action for a better future for people living with a rare disease by 2030. It’s important that people with OI are also represented in this important campaign document, asking for a new European action plan for rare…

READ MORE
ADVOCACY

Save the European Health NGOs!

Large European health NGOs like EURORDIS – European Rare Diseases Organisation and European Patients’ Forum play a pivotal role in advocating for and communicating the needs of the most vulnerable in society, whilst continually pressing for greater action in health policy at the EU level. OIFE totally support their work to restore the operating grants…

READ MORE
ADVOCACY

The IMPACT Survey is live – spread the word!

The IMPACT Survey is a joint initiative between the umbrella organization Osteogenesis Imperfecta Federation Europe (OIFE), the OI Foundation & the pharma company Mereo BioPharma. Together we’re delighted to announce that English version of The IMPACT Survey is now live and will be running until 10th September 2021. Next week we will also launch the survey…

READ MORE
ADVOCACY

ERN Exchange Programmes

We have important information for professionals working with rare bone conditions who belong to a healthcare provider in the European Reference Network for Rare Bone Diseases (ERN BOND). Get involved in the new Exchange Programme! And check out the ERN Research Mobility Fellowships! ERN Exchange Programme The European Commission funded the ERN Exchange Programme 2020-2022…

READ MORE
Translate »