Engaging with the rare patient voice
A new training programme to be launched on Rare Disease Day will help everyone across Sobi engage more closely with the rare patient community.
Rare Disease Day on 28 February is an opportunity to raise awareness and generate change for the 300 million people worldwide living with a rare disease, their families and carers1.
For Sobi, this is an important moment for us as a company to reflect on how we can contribute to this change and transform life for people with rare diseases. To do this effectively, we need to continue to improve the way we engage with the rare patient community, giving them a voice to express their needs and integrating this voice into every step of our development and delivery of medicines. Patient engagement can be an integral part of everybody’s role at Sobi.
On Rare Disease Day, we are launching a new internal training programme to improve understanding of how and why we engage with the patient community. Topics include the value of patient engagement, what meaningful patient engagement is and how we can get it right.
The training programme has been developed by the Patient Focused Medicines Development initiative in collaboration with industry, patient advocates and other stakeholders including regulatory authorities.
“The pharmaceutical industry is experiencing a cultural change from doing things for patients to doing things with patients,” says CEO Guido Oelkers. “On Rare Disease Day, we continue our journey in building an integrated patient-centric mindset. As a rare disease company with a diverse portfolio, we are ready to walk the talk when it comes to patient engagement throughout the life cycle of drug development. The introduction of this training programme is only one step of many more to come.”
The voice of rare patients is vital for our continuing work in transforming life for people with rare diseases. The more we as a company can understand, develop relations and partner with the patient community, the more we can strengthen our mutual impact and make the most of our rare strength.
