Here you can find articles and papers on patient engagement and rare diseases — our favourite topics. Enjoy reading them ..!
Sometimes we write about what we have experienced or learnt in our work with patients and relatives. You can read about that here in our magazine. We are happy to share our knowledge so that patient-oriented thinking and action eventually become entirely normal.
As patient orientation grows, so does the need for suitable formats for long-term and structured cooperation with patients and relatives in order to jointly develop services that meet their needs. So here are our top 10 things to look out for.
We created this patient journey of Lilly, a European woman living with cervical dystonia in cooperation with Ipsen and Dystonia Europe. Lilly’s journey is based on the results of a survey of European patients living with CD.
In the specialist magazine Pharma Relations, we shared our views together with others on the future of patient support programmes. We would like to see PSPs made available to all patients with a certain indication, regardless of their therapy.
Talina is a vibrant young woman in her late 30s. She works in addiction support, recently got married, likes concerts, and wants a family of her own. Talina also has lymphomatoid papulosis, a rare benign T-cell pseudolymphoma affecting the skin. And this is her story.
How does successful patient engagement work, what meaningful opportunities are there for using patient engagement across the PLC, and how can companies approach the topic? If you are still in the early stages and are looking for an overview, you should take a look here.
People with rare diseases face particular challenges and the pharmaceutical industry has the opportunity to play an active role in the care of those affected. Who, how, what??? It’s all in the article.
Only by involving patients and jointly designing programmes can services be developed that are relevant and in line with their needs. THAT’S IT IN A NUTSHELL! You can read here how to do this successfully. A PSP is only good if those affected by a disease and organisations recommend it.