Blog Archives

Dijana Krafcsik of Vifor Pharma

22/2/2021

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.

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?

Dijana and Catherine representing the SEE ME. HEAR ME. initiative

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!

Dijana with participants in the SEE ME. HEAR ME. initiative

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.

Dijana with participants from the SEE ME. HEAR ME. initiative, and Vifor Pharma CEO Stefan Schulze

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.

To find out more about the work of Vifor Pharma please visit;
www.viforpharma.com/en-gb

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Debi Crist of Rare Patient Voice

17/2/2021

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Debi Crist's role at Rare Patient Voice came from a need to make a difference, born out of her personal experience as a caregiver to her son. She talks to RARE Revolution about just some of the projects her organisation is involved in, how she reaches out to patients, and about the sense of empowerment her role gives her

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?

We have been engaging with patients from the start at Rare Patient Voice. We began by attending patient healthcare events such as conferences, walks, and symposia. Through our network of 50+ patient advocates, we were able to attend hundreds of events a year. At the same time, we knew that we could not reach all of the patients we wanted to by attending these events, so we began to engage patients online as well. I began connecting with online support group admins, advocacy groups, and smaller non-profits. It allowed us to reach patients and caregivers on a larger scale. Now that we are in the world of COVID-19, in-person events haven’t been an option, so the online engagement has become essential for our business. In the future, I hope to build a Team of Outreach Specialists to help reach even more patients and caregivers.

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

When we have a project that needs additional participants, that’s where I come in. I reach out to current connections I’ve made with support group leaders, advocacy groups, and foundations. Each one has a different way of reaching their community members and I help them come up with a game plan to reach as many patients and caregivers as possible. This also gives me an opportunity to find new connections and build our growing partnerships.

In a typical week, I may reach out to 50 of our patient advocacy and support groups and recruit hundreds of patients to participate in research. For a recent project, I was tasked with finding patients with Breast Cancer to participate in a 20 minute online survey and compensation was $50. I contacted 12 groups and created advertisements to get the word out about this study. By the end of the week, I had identified 151 patients and the study was a success!

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

My son has Crohn’s Disease and I joined Rare Patient Voice as a caregiver so I could contribute my voice to research. I was hired as a patient advocate and attended the in-person events. I enjoyed sharing my voice and my experiences as a caregiver directly with the companies who are creating new products, treatments, and resources. It’s incredibly empowering and I felt that I was actually making a difference.
As a Mother, I am a fixer. I couldn’t fix this devastating diagnosis for my child. I felt so helpless. Rare Patient Voice empowered me and gave me a voice. Even though I could not fix or cure my child’s condition, I could be a part of the big picture and felt I was actually making a difference.

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

This role is one of the most important parts of our business. Without the patients and caregivers, we wouldn’t be able to do the research and meet our client’s needs. There is nothing more important to our organisation and everything we do is focused on our patients.

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

Patients are the heart of Rare Patient Voice and by constantly connecting with new support and advocacy groups I help patients to share their expertise! The more patient groups I connect with gives patients opportunities to share their experiences and contribute to new products and services.

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

Since our business is focused on patients, all operational business needs revolve around finding patients and connecting them with research opportunities.

7.	What are the most rewarding aspects of your role?

Empowering patients and caregivers. Giving them a voice is truly the most rewarding thing I have ever done.

8.	What is your proudest moment in your career thus far?

We have created a referral program. Although anyone qualifies to participate in our referral program, it’s been amazing to help increase donations to these smaller ‘mom and pop’ advocacy groups and non-profits. They don’t have the reach and support that larger foundations have for fundraising. We enable them to offer their community the opportunity to have a voice, participate in research that directly affects their conditions all while getting paid $100 per hour. For every person that joins Rare Patient Voice through their group or organisation, we donate $5 to the organisation. It can add up quickly! It’s been a wonderful fundraising opportunity with little effort and no cost at their end. When I started at Rare Patient Voice, we had four referral partners and we now have over 800. This is most definitely my greatest achievement in this role to date.

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

You must be passionate about giving patients and caregivers a voice and a home. When you are Rare and even non-Rare, it can be difficult to find your people, your home, and a safe and understanding place. Working in this space is an honour and a privilege, and it is essential that you are dedicated to making a difference for this community.

10.

If you weren’t Patient Engagement Officer of Rare Patient Voice, what was Plan B? What did your 10-year-old self want to do as a job?

I majored in business but put my career on hold to raise my two children. I always planned on getting back to the workforce, but life had a different plan. My son was diagnosed with Crohn’s Disease at age nine. My world revolved around managing his medical needs and getting him into remission. If my path were different, I could see myself in a business development role having something to do with real estate.

To find out more about the work of Rare Patient Voice please visit;
www.rarepatientvoice.com

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Dijana Krafcsik of Vifor Pharma

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Rare Revolution is published by NRG Collective, a not-for-profit media company specialising in rare disease content
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PEO​Series

Dijana Krafcsik of Vifor Pharma

Debi Crist of Rare Patient Voice

2.

3.

6.

Author

Archives

Categories

Rare Revolution is published by NRG Collective, a not-for-profit media company specialising in rare disease contentContact UsEditor: editor@rarerevolutionmagazine.com​Advertising: rstewart@rarerevolutionmagazine.com

PEO
Series

Rare Revolution is published by NRG Collective, a not-for-profit media company specialising in rare disease content
Contact Us
Editor: editor@rarerevolutionmagazine.com
Advertising: rstewart@rarerevolutionmagazine.com