From May 12-13 OIFE was represented by Alessandra Tolaccia at the iDR26 – the International Drug Repurposing Conference 2026 in Brussels. The conference was an inspiring gathering of researchers, clinicians, patient advocates, and industry leaders organized by the project REMEDi4ALL. From AI-driven discovery to patient-led innovation, the energy around faster, more accessible treatments is real. Beyond…
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…
As part of a business trip to African countries, our vice president Alessandra Tolaccia visited the South African OI-organization Brittle Bones South Africa, who organized meetings with OI doctors and researchers in South Africa. Important discussions were had about how we can strengthen collaboration between different countries to improve lives of people with OI. Quote…
At the OIFE general assembly on Friday the 6th of June, the OIFE member organizations unanimously elected a new OIFE Board. – Ingunn Westerheim – OIFE president, Norway – Alessandra Tolaccia – OIFE vice president, Italy (NEW) – Bruno Van Dijck – Treasurer, Belgium (NEW position) – Stephanie Claeys – Board member, Belgium – Natalia…
For many across the rare disease community, not being understood can be as painful as the condition itself, impacting mental health and leaving people feeling invisible. This is why EURORDIS launched the EURORDIS Mental Health & Wellbeing Partnership Network. Both Alessandra Tolaccia and Rebecca T. Skarberg from OIFE have been part of the network. In…
Since our newly elected Vice President Alessandra Tolaccia is a fellow from European Patients’ Academy on Therapeutic Innovation (EUPATI), she was invited to attend the Patient Engagement Open Forum (PEOF) which took place in Baveno, Italy from June 10-12. Straight from OIFE Conference 2025, she attended 2,5 days of educational talks and workshop about patient…
On April 11th, Ingunn Westerheim and Alessandra Tolaccia represented OIFE at the Annual Summit of the European Society of Association Executives (ESAE) in Brussels. ESAE fosters the professionalisation of Association management through peer-to-peer knowledge sharing and collaboration. As part of the Community, Association professionals learn from one another, gain a thorough knowledge of the sector, overcome…
From March 5-7, OIFE board member Alessandra Tolaccia was representing OIFE at the Re(Act) Congress in Brussels, Belgium. The congress covers different topics related to rare conditions including newborn screening, data sharing, advanced therapies and impacts of rare conditions on patients, families, and society. You can see the full program here. Organisers stressed that strong…
Interview with Alessandra Tolaccia, new OIFE Board Member Welcome to the OIFE Board Alessandra, can you tell us a little bit about you? My name is Alessandra Tolaccia, I am 49 years old, and I am Italian. Since 2020 I am living in Italy together with my husband Marco, after few years spent in South…
