RARE Daily

Rare Leader: Christine Von Raesfeld, Founder and CEO, People with Empathy

December 3, 2020

The Basics
Name: Christine Von Raesfeld

Title: Founder and CEO

Organization: People with Empathy

Social Media Links:

Disease focus: People with Empathy is focused on patients across disease areas and works to connect patients to other healthcare stakeholders.

Headquarters: Sunnyvale, California

How did you become involved in rare disease: I am a patient, but I was looking for a purpose. I was in my twenties and going out on permanent disability. I was looking for different options to give myself meaning. I have a horrible medical history. My healthcare experience has been a series of unfortunate events. I’ve got permanent damage from medications. I’ve got three joint replacements. I have encephalopathy. I lost some of my night vision. I also have lost medical records and lacked support growing up. I took over the social media for a small nonprofit here in Northern California. Through social media, I got them to be listed as one of the top lupus nonprofits in the world, according to Healthline back in 2017, started raising money, and just got involved. I reached out to Patients Like Me and applied for a position there and out of almost 1,000 applicants I was chosen in 2018. I became a part of a patient advisory team for their “all in for lupus nephritis” campaign. I started speaking at conferences on the patient experience. It was interesting because it wasn’t nonprofits that helped me. It wasn’t family. It was the disease community and people individually and in industry who took an interest in me and my story and just helped me. My co-founder and I bought the domain name, People with Empathy, three years ago on a whim because we thought we wanted to start some kind of social networking thing here in the Bay Area. I was looking for opportunities to network and give patients a different voice to come up with solutions for things that had gone wrong in my life and maybe how we could fix these in the future to benefit people. I believe more in collaboration and collective intelligence and bringing together different perspectives to come up with viable solutions that we can use in healthcare. I have a little bit of an outside of the box thinking. I like to tell people that my major skill is networking and just getting to know people and then just connecting from there.

Previous career: Insurance sales

Education: Associate of Arts degree in general studies from Mission College

The Organization
Organization’s mandate: People with Empathy connects key stakeholders in healthcare to improve the quality of life of patients and care partners. At People with Empathy, our purpose is to reimagine the way patients can participate in the innovation of groundbreaking therapies and technologies.

Organization’s strategy: We’re looking at connecting individuals in different silos, opening communication and being able to look at issues from different perspectives. We started with a series of webinars on Facebook, bringing people from industry, as well as a different perspective from different silos in industry, to talk about issues that each of us are facing.

Funding strategy: We’re currently running on volunteer time. We’re accepting donations, but also looking at working with smaller companies to bring in that patient perspective on a fee-for-service basis. We’re also look for sponsors for events and our series of talks. We’ve had a lot of companies show interested in doing that.

What’s changing at your organization in the next year: Hopefully, the funding. We’re looking at a series of discussions with patients and industry on how to incorporate those patients and at what level each patient should be incorporated. I think that there is a place for patients in this industry, on the pharmaceutical side and on the government side, but we need people who are prepared and can speak in the way that is most effective.

Management Style
What would you say your management philosophy is? I like to look at it as the anti-CEO, where we’re friends first. I know it sounds ridiculous, but I’ve been burned by a lot of organizations and companies. I’m looking to connect and work with people who have the same vision and the same outlook on where healthcare should be going, and that’s with the patient first.

Guiding principles for running an effective organization: Empathy—looking at people at where they’re at and finding ways in my own organization where we can help people excel on their own.

Best way to keep your organization relevant: Conversations—being there, having that seat at the table, but also being educated and sharing our perspectives. Collaboration is key and finding the right people to have those conversations with is essential.

Why people like working with you: People tell me, “Christine, it’s just fun being on a call with you and your team.” There’re no arguments. We may have different perspectives, but we let each other speak. I guess again, it’s that relationship that’s deeper than just business. A lot of the people that I do work with have become good friends.

Mentor: Way too many to list. There are so many individuals who have taken time from their own lives to help me on this journey of mine. Paul Simms, pharma provocateur, Amir Kalali of the CNS Summit, David Hunt, Havas Health and you, my own board member Jim Murray and Jamie Heywood, both previously of PatientsLikeMe. Those are just a few of the people I consider my mentors. To be honest, I lucked out having amazing connections who will take the time to guide and advise me—it means a lot.

On the Job
What inspires you: Knowing there are people out there that see the problems, have potential solutions and are willing to collaborate inspires me. Seeing others who have been in similar situations to myself succeeding and helping others to recognize their potential is also another factor that keeps me motivated.

What makes you hopeful: In the beginning of my career, I had an eye-opening experience at an industry event for pharma executives. The topic was collaboration and how to bring rare drugs to market sooner. We were asked how many were willing to do that, and to my surprise nobody in that room raised their hand. I sat for a minute and I struggled with it. I didn’t know what to do. I left the room, and asked, where are the other patients? I was told there were none and that I was brought in for my perspective. I returned to the session, and prepared myself. When the session opened for questions, I made my comments. As a patient, I was disappointed, here was this room full of people that I believed were my only “hope” for a normal life and they weren’t even willing to work together. I was discouraged and disappointed and for a minute thought negatively about industry as a whole. But that was years ago, and things have definitely changed. I’ve since learned that our industry is not all bad. There are people out there who want to help and I’m finding more of those people every day. It’s the collective intelligence and collaborative leadership of these individuals that gives me the hope and motivation to go on.

Best organization decision: Deciding to work in collaboration with others. As an organization, we have our own strengths and weaknesses and realize that our own bandwidth is limited. We’re looking at a collective approach to leadership in order to solve some of our most basic issues. I don’t know yet if it’s going to fail or succeed, but I do know that the people we’ve chosen to work with are willing to fail and succeed with us.

Hardest lesson learned: That not everybody is on your side. There are people out there looking to take advantage of you.

Toughest organization decision: Starting our nonprofit in the middle of a pandemic and finding the right people to work with. Many people are willing to step in on the success but not as many are willing to stick by you when you fail.

Biggest missed opportunity: Time away because of my own health struggles. As a person living with multiple conditions, this year has been difficult. Two months ago I had an ICD implanted and I’m still trying to catch up and reorganize.

Like best about the job: Networking. I thrive in social situations and love meeting new people. I like to get to know people through their experiences which may be one of the reasons why I connect differently. I don’t necessarily want to hear about someone’s job. I know what people do. I know what part of industry they work in, but what I really want to know is why they are doing it and what their reasons are. Using that networking, getting to know people, getting to know their stories and their experiences, and then being able to use those experiences to produce viable solutions, that’s the best part.

Like least about the job: Finding the right people is always hard. I invest a lot in people and like to give them the benefit of the doubt. Investing in people and finding out that they aren’t what I thought they were is always a disappointment.

Pet peeve: Despite the negatives, I found there’s always a silver lining. My two biggest pet peeves would have to be people who focus on the negatives and those who feel sorry for me. I have a hard time with people who tell me that I’m doing too much, and I should relax because I’m going to get sick. I like to tell people I am sick, and I don’t want to sit in my bed and die. I want to do something, make a difference and live a life of purpose.

First choice for a new career: Hypothetically, if I could do anything in the world, I’d like to build an island. There was a man a few years ago that built one out of recycled water bottles. I think it was off the coast of Mexico or something. It was self-sufficient; he grew plants, he had animals. So if I had to choose a new career, it would be to build this island into our own utopia, establish a real community and barter.

Personal Taste
Most influential book: The Five People You Meet in Heaven by Mitch Albom

Favorite movie: What Dreams May Come

Favorite music: my music taste varies depending on my mood. I like country, ’90s music and oldies that remind me of my dad.

Favorite food: I’m a big fan of Thai food and Filipino dishes that remind me of my childhood.

Guilty pleasure: Medical documentaries and reality TV. I like to get into the thought processes of others. Seeing how they deal with issues/problems helps me navigate my own issue sometimes.

Favorite way to spend free time: I’ve been spending a lot of time lately working on myself. I like to be around people, though I value my time alone. For me, it’s not about what I do, but more so, who I’m with and how I’m feeling while I’m doing it.


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