OIFE believes that all clinical trials and research projects affecting OI directly, should have some kind of patient involvement. Patient involvement can happen in different ways and in different phases of a project. Sometimes advice from a new and unexperienced parent or a child is needed. Other times a person with OI, who can represent…
The IMPACT Survey is a joint initiative between OIFE, OIF & Mereo BioPharma. The survey will be launched in summer 2021 and we will need the help of all our member organizations and the OI-community to spread the word and encourage as many people with OI (and parents) to fill in the survey. Written by…
On November 30th OIFE was represented at an interactive meeting about Orphan Drugs hosted by the European Medicines Agency (EMA). Orphan drugs are medicinal products intended for diagnosis, prevention or treatment of rare diseases. There are currently two designated orphan drugs being investigated in OI, the most known being setrusumab from Mereo Biopharma. Products for…
On Tuesday 18th of November Ingunn Westerheim (OIFE) & Tracy Hart (OIF) together hosted a workshop about patient involvement in research at the ICCBH Virtual Forum. The workshop had more than 50 participants from Europe, US, Canada and beyond. It included three talks about patient involvement from different perspectives as well as a constructive Q&A…
The International Children’s Bone Health Conference (ICCBH) is hosting a virtual forum from November 18-20 and we encourage professionals and patient representatives to attend. Target group The meeting programme of ICCBH Virtual Forum is designed for healthcare professionals and researchers. Pharma industry regulations do not allow open invitations to members of the public to attend. However,…
Patient involvement in ERN BOND Patient involvement has been an important principle in the European Reference Network for Rare Bone Disorders (ERN BOND) all the way from the start. Patient representatives are included in both the steering committee and the working groups of the network. OIFE and other patient organizations are consulted when further advice…
EURORDIS launched Winter School with the aim of deepening patient representatives’ understanding of how pre-clinical research translates into real benefits for rare disease patients. The training equips participants with knowledge and skills so they are empowered to effectively participate in discussions with the researchers, policy makers and companies responsible for research or research infrastructures. The 2nd edition…
The European Medicines Agency (EMA) was founded in 1995, and since then has worked across the EU and globally to protect public and animal health by assessing medicines and by providing independent, science based information on medicines. In 2000, patient representatives joined for the first time as members of one of EMA’s scientific committees. Today,…
On July 9th 2019 the OIFE was represented by our honorary member Taco van Welzenis in a meeting at the European Medicines Agency (EMA). The EMA is an agency of the European Union in charge of the evaluation and supervision of medicinal products. They used to be located in London, but has recently moved to…
