Patient Engagement Networking
admedicum, in collaboration with WAPO, Lupin Pharmaceuticals held a PEGASUS Patient Engagement Networking event on 10 December in Leiden. We hosted around 40 attendees from patient organizations, interested patients, companies, and other stakeholders in healthcare in an informal networking event over drinks and snacks at WAAG restaurant in Leiden, the Netherlands.
The evening featured short keynote speeches by
Building a global alliance for rare diseases and the difference it makes for patients and industry
Sheila, who is the Vice President of WAPO, spoke about how the World Alliance of Pituitary Organization was created in 2016 as a global umbrella organization for pituitary disease patient groups like for acromegaly, Cushing’s disease, and hypopituitarism. WAPO organizes an annual global summit where it coordinates the invitations and involvement of industry partners that have treatments in the pituitary space. One of WAPO’s cornerstone projects is a global mapping of treatments in each country by their member organizations. They aim to collect data on where treatment gaps are and work with the local patient group to address those issues and facilitate patient access to treatments.
Developing cross-border and sector partnerships for improving the lives of people living with rare bone diseases like OI
Dagmar inspired the attendees with her story and enthusiasm for patient involvement. Dagmar created Care4BrittleBones after her daughter was diagnosed with osteogenesis imperfecta (OI) and her dream is that the organization can make a difference for people with OI through more and better research. Dagmar and her organization recently organized an international conference for OI in Amsterdam where researchers and patients came together. A representative from the European Medicines Agency participated in the conference providing insights into the increasing importance of using real-world data in clinical trials.
We would like to express our gratitude to Sheila and Dagmar for their contributions and for starting off some very interesting conversations amongst the event participants!