We are pleased to announce our latest news to you.

Aparito and admedicum co-organised a roundtable with ten participants from the sector to discuss how decentralised trials can effectively collect data. Read the full summary.

Announcing the Launch of the European Alliance for Newborn Screening in Spinal Muscular Atrophy (SMA NBS Alliance): Opening a new horizon for children born with SMA

Patient engagement in 2030: how can patient engagement contribute towards building a new ecosystem for drug development and therapy will be held on 3 December 2020 in Amsterdam with Holland BIO. Save the date and looking forward to seeing you.

admedicum met with Joachim Sproß, managing director of the German Society for Muscular Diseases, to talk about the challenges that the corona crisis poses for patients and self-help. 

Our colleagues Andreas and Robert attended the European Conference on Rare Diseases online recently and share their reactions here.

After evaluating and identifying the right patient representatives and assessing the regulatory framework conditions some companies may still struggle with a question that may sound simple but can be really tricky when it comes to acting: How to approach a patient or a patient organization in the best way?

Sponsors need to engage with patients on any protocol design changes and actively communicate the change to minimize dropouts. Sponsors can push digitization more and reduce some burden to the patients or arrange for
home nursing visits.

admedicum presents best-practice examples that show how patient organizations have managed to react quickly to an unpredictable situation, to successfully adapt their services, and thus at the same time to be active patient advocates and strong partners for their members. 

Sponsors need to reach out to the patient communities where they are active and offer information (as it becomes available) and support. Sponsors have to rethink their communications activities and create a calming effect. Companies and researchers need to create a Patient Communication Plan

admedicum Business for Patients organized a series of small roundtables with patient and industry experts. This an anonymized summary of those conversations in order to help you with your own decision making. With the current challenges in the healthcare system, we believed it important to listen to patients...

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