OIFE advocates for patient involvement in all clinical trials and research for Osteogenesis Imperfecta (OI) and other rare diseases. Advanced Therapy Medicinal Products (ATMPs) are innovative medicines for human use based on genes, cells, or tissues. This includes stem cells, that are currently being researched for OI. EURORDIS hosted two webinars about the topic: Webinar…
OIFE was represented by Alessandra Tolaccia at the webinar about patient involvement in ATMP, which means Advanced Therapy Medicinal Products, which are innovative medicines for human use based on genes, cells, or tissues. This includes stem cells, that are currently being researched for OI. The first webinar in this series brought together patients, researchers and…
OIFE’S FIRST EUPATI FELLOW ALESSANDRA We congratulate our Italian volunteer Alessandra Tolaccia with her graduation in Madrid today, as OIFE’s first EUPATI fellow. The EUPATI patient expert training programme on medicines research and developent is organized by the European Patients’ Academy on Therapeutic Innovation (EUPATI). The programme consists of six modules: 1) Getting started, 2)…
OIFE has many volunteers representing the voice of OI at various conferences, webinars and workshops. This gives us both important knowledge, but also influence. From 14-17 May 2024 OIFE’s former Vice President Dace Liepina (left in the photo) attended The European Biobank Week, where one of the topics was how patient organizations can be involved…
Alessandra Tolaccia is representing OIFE at the EUPATI Patient Expert Training Programme. The EUPATI Expert Training Course is a unique opportunity for patient advocates to receive expert-level training in medicines research and development, specifically tailored for them. The certificate course is a mixture of online and face-to-face education modules over a 13-month period. April was…
By Alessandra Tolaccia, OIFE Volunteer I have been suffering from chronic pain for over 15 years now, and every time I have approached a new doctor looking for help, the answer has always been the same: pain in muscles/tendons has nothing to do with OI. But why doesn’t my pain go away with the common treatments…
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…
