When we aren’t patients, rare diseases may provoke different emotions in us when they pop up in our heads. On one hand we may feel empathy and curiosity, and on the other hand we may feel alienation and even indifference. It is important to know though, that we are all going to be patients at some point. In this episode, Dr. Rosie Sendher and Makenna Rice sit down with Onno Faber, a patient advocate and NF2 patient.

Onno Faber is a thought leader, speaker and entrepreneur. He is the founder of RDMD, a medical data science company that accelerates drug research for all kinds of rare diseases. Their mission is to empower patients and communities by granting them control over their own medical records, something that is rarely done in the field.

This episode holds important information on what goes behind the scenes of the constant rare diseases’ research. Join us as Onno walks us through his own diagnosis, sampling, sequencing the tumour DNA and research on NF2, and the motivations behind the birth of his own company. You’ll learn about the benefits of disciplines merging and the importance of events that propitiate collaborations. Listen now to reflect on your own condition and awaken your curiosity and empathy for patients of all kinds.

In this episode we chat about:

  • (01:35) – How Onno’s rare diagnosis awoke his interest in the medical field – “When you’re 33 you don’t expect a brain tumor.”
  •  (04:28) – On NF2’s health repercussions on the body – “It’s fairly complex. There are also multiple types of tumors that you can develop.”
  • (06:28) – A hackathon with cause: How the sequencing of Onno’s tumor tissue resulted in a synergetic collaboration of different fields – “Allowing these different groups to interact, I think there’s so much more creativity that you can tap into.”
  • (18:11) – Exploring the grey areas inside and between fields to come across richer knowledge – “If we do more of this in each of our disciplines, who knows what we’re going to learn?”
  • (21:54) – Why diseases are unlikely to be cured during a hackathon – “A weekend is not enough to find a solution.”
  • (24:01) – The unexpected drugs Onno started to use for treatment – “For me that was really what marked the starting point of my journey.”
  • (24:58) – What motivated him to start his own company and give patients a voice, RDMD – “I realized I was in charge of my data, so I could decide to share with whoever I wanted.”
  • (31:41) – The improvement of medical record systems for the patients’ benefits – “A lot of the electronic medical record systems are built for billing purposes and not for research.”
  • (34:36) – How RDMD reaches new patients and creates communities and teams up with companies and institutions – “People are organized in various different platforms. We want to make sure the community gets all kinds of value.”
  • (43:54) – Why rare diseases are a problem that should concern everyone – “We are all going to be patients.”

Resources

TEDxTalk: We’ll all be patients one day

RDMD

RareMatter

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