Dijana Krafcsik became interested in the development of medicines at a very young age. Coupled with her desire to help others, she is now the External Engagement Director for Vifor Pharma Orphan Diseases. She talks to RARE Revolution about some of the projects she has been involved in to support those with ANCA-associated vasculitis and how she ensures the patient remains at the heart of everything they do

PEO series: meeting the beating hearts behind the rare brands

1.

How new is the patient engagement role in your organisation, how has it evolved and what are your hopes for the role in the future?  

Vifor Pharma puts the patient at the core and incorporates the patient voice along the entire lifecycle of our products from Research & Development, to Patient Access, Disease Awareness and Patient Support Programmes. We strive to understand their needs and support them in the best way possible. We seek to understand how we can provide meaningful support to patients by engaging directly with them and learning how to develop solutions that will make a difference. For example, last year Vifor Pharma introduced specific questions in the recruitment of new employees to ensure they would live up to our patient-focused commitment. Our Patient advocacy and policy department supports our ambition that everyone in the company, irrespective of their function, understands patients’ experience to contribute to better healthcare solutions for them.
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My role has evolved within Vifor Pharma thanks to some pioneering projects within our work in Rare Disease, where the exchange with the community is of particularly high importance. I am now the External Engagement Director for Vifor Pharma Orphan Diseases, focused on partnering with the ANCA-associated Vasculitis (AAV) community. There is excellent support internally at Vifor Pharma to support me in this critical area and colleagues are regularly reaching out to us to learn and share experiences.

2.

What does a typical week entail for you, and are there any specific projects you can tell us about?

With our community, we distinguish between annual projects across EU and national/local projects. Our EU projects include the “SEE ME. HEAR ME.” co-creative initiative, as well as the development of the myancavasculitis.com digital platform. We also partnered with the Rare Revolution Magazine (RRM) team to launch a special edition about AAV that was produced in multiple languages.
​National projects include support for local workshops, previously held face-to-face and now virtual. We’re just kicking off another great pan-EU initiative that we will co-create with the AAV community so watch this space! 

3.

What were your personal motivations to taking up a role in patient engagement?

I have always been interested in working closely with patient associations, but my current role evolved, rather than something I applied for. How can you learn best about the disease? Well, I think you learn most by talking directly to the community and the people affected by the disease, as well as their treating physicians. However this is not a one-way street where we only take information, instead we work together to identify common goals—in our case it’s about raising awareness of AAV.

4.

What makes the role of patient engagement officer important to your organisation?

The framework for how pharmaceutical companies can liaise with patient associations is strictly regulated on a European and national level.  These regulations must be followed to the letter. It is also important that the community is not overwhelmed by too many requests from different areas of the organisation. Therefore, a Patient Engagement role can help to facilitate between the organisation and the community to define and achieve their joint goals.

5.

In your role, how do you ensure the patient voice remains central?

Within my role I have the opportunity to discuss with our community how we can create meaningful change within AAV, building on the great work they are already doing. We are constantly in communication with the patient groups and we share new educational materials with the community for input and validation as part of our standard development process. 

6.

How do you reconcile operational business needs with elevating the patient voice?

Creating awareness for a rare, severe, autoimmune disease such as AAV is something that a pharmaceutical organisation has in common with the community—a true win-win.

7.

What are the most rewarding aspects of your role?

Patient Association heads are often affected by the disease because either themselves or a loved one is a patient. I admire the passion and dedication they put into their work and I realise their work is often taken for granted. These individuals often provide very positive feedback to me and our team—this fuels our passion at Vifor Pharma and makes us even more determined to support them in making meaningful change in AAV.

8.

What is your proudest moment in your career thus far?

​Our CEO asked us to update him on the latest projects we were working on with our community. He and the whole senior management team closely follow what we do and everybody across the company has been very positive and encouraging of our work.  This was a great moment, receiving recognition for work that is truly patient focused and making a difference to patient’s lives. 

I am so proud to see all we have achieved and are continuing to achieve through the “SEE ME. HEAR ME.” campaign, all based on our close collaboration with the AAV community. Looking back at the campaign, it struck me how far we’ve come—reaching over 60,000 people with myancavasculitis.com (available in seven languages), 50,000 on Facebook and over 6 million through national media. Feedback from everyone both internally and externally has been very encouraging and we stay true to our mission at Vifor Pharma—to help patients around the world live better, healthier lives. This is not just a tagline for us, it’s our goal every day we come to work.

9.

What advice would you give someone considering working in the rare disease space?

Firstly, I would congratulate them on their choice as the work is very meaningful and secondly, I would encourage them to learn about the disease from the community.

10.

If you weren’t Patient Engagement/External Engagement Director at Vifor Pharma what was Plan B?  What did your 10-year-old self want to do as a job?

When I was seven years old, I went to pick up medicines from the pharmacy for my family. I watched the staff advise and help people picking up their medicine. It was a mixture of wanting to help people and the curiosity of how a medicine is developed that got me where I am today. It was a topic where I had a huge discussion with my father. He felt a woman was better suited to the banking or financial sector due to better working hours. I disagreed and followed my own path. Today he is very proud. I tell my kids, do what you love so you can be happy. If you are happy and it is your passion then you will be successful.