The Human Algorithm

trialport

The Human Algorithm is a podcast from trialport about the people behind rare disease research. Each episode features patient advocates and leaders of rare disease organizations. They talk about living with rare conditions, building community, and making clinical research work for patients and families.

Episodes

  1. 2d ago

    Hope Is Ineffective Without Action: Kristen Wheeden | The Human Algorithm by trialport

    "Hope is ineffective without action." Kristen Wheeden, president of the United Porphyrias Association, joins The Human Algorithm to share how her son's diagnosis turned a career in business and public health into a calling.Kristen's son Brady was diagnosed at age four with erythropoietic protoporphyria (EPP), a rare condition where exposure to light causes excruciating pain. Kristen dove into the rare disease world, earned a doctorate in public health, and in 2022 helped launch the United Porphyrias Association. Today Brady is a senior in college. Kristen talks about his path from counting down the years until he was old enough for treatment to taking part in a Phase 3 trial, and why the work has to be about more than one family.In this episode:• "Grief is a place you visit, not a place you live"• Building a nonprofit that can outlast its founder• Letting your child decide how public their diagnosis is• What getting the placebo in a Phase 3 trial shows about randomization• Why big pharma frameworks don't fit rare disease, and how do you measure sunlight?• Making sure research is right for each patient, and why it doesn't have to be right for everyone• UPA's junior ambassador program and the question "What's your superpower?"About The Human AlgorithmThe Human Algorithm is a podcast from trialport about the people behind rare disease research. Each episode features patient advocates and leaders of rare disease organizations. They talk about living with rare conditions, building community, and making clinical research work for patients and families.About trialportFinding a clinical trial is only the beginning. trialport helps people find the right study, understand what it really means, and decide whether it fits their life, not just their diagnosis. Understanding comes first. Decisions follow.Explore clinical trials: https://app.trialport.comLearn more: https://trialport.comLinkedIn: https://www.linkedin.com/company/trialport/Instagram: https://www.instagram.com/mytrialportTikTok: https://www.tiktok.com/@mytrialportThis episode is for educational purposes only and is not medical advice. Guests' views are their own.#RareDisease #Porphyria #TheHumanAlgorithm

  2. 3d ago

    All You Need Is the Next Step: Karen Morici & Emily Durham | The Human Algorithm by trialport

    There's no single way to be a rare disease advocate. Karen Morici of CDG CARE and Emily Durham of the Channeling Hope Foundation join The Human Algorithm to share how a parent and a scientist found their way into advocacy, and why every voice counts.Karen was a hairstylist in Chicago with no science background when her son was diagnosed with a congenital disorder of glycosylation (CDG). One phone call from CDG CARE made her feel less alone, and helping other families became her way of healing. Emily always wanted to be a scientist. Research ethics led her to rare disease, and today she helps NALCN families make sense of genetic reports, learn about gene therapy, and get involved in research.In this episode:• Why patient advocacy isn't one-size-fits-all• The gap between what regulators can measure and what actually changes a family's life• Why researchers should share data back with the communities they study• Planning for the unpredictability of rare disease life• Why patients, families, clinicians, researchers and advocates belong in the same room• Why every voice matters when your whole community "can be written on the back of my T-shirt"About The Human AlgorithmThe Human Algorithm is a podcast from trialport about the people behind rare disease research. Each episode features patient advocates and leaders of rare disease organizations. They talk about living with rare conditions, building community, and making clinical research work for patients and families.About trialportFinding a clinical trial is only the beginning. trialport helps people find the right study, understand what it really means, and decide whether it fits their life, not just their diagnosis. Understanding comes first. Decisions follow.Explore clinical trials: https://app.trialport.comLearn more: https://trialport.comLinkedIn: https://www.linkedin.com/company/trialport/Instagram: https://www.instagram.com/mytrialportTikTok: https://www.tiktok.com/@mytrialportThis episode is for educational purposes only and is not medical advice. Guests' views are their own.#RareDisease #PatientAdvocacy #TheHumanAlgorithm

  3. 5d ago

    Plant the Seed: Benny Sorensen on Building Medicine Around People | The Human Algorithm by trialport

    What does it take to build medicine around people, not technology? Benny Sorensen, MD, PhD, CEO of Hemab Therapeutics, joins The Human Algorithm to share 25 years of "watering the seed" for people living with rare bleeding disorders.It started with one afternoon in a coagulation lab in Denmark. A professor handed a medical student the keys, told him to learn to take his own blood, and sent him to listen to patients' stories. Benny left determined to help them, and he's still at it.In this episode:• Why Hemab calls itself a people company, not a platform company• The children's book Benny calls his "business acumen"• What Genzyme's Henri Termeer taught him about building medicine that matters• Why he's proud to be "a very unreasonable human being"• How patients can make their voices count, from natural history studies to clinical trials• Why people living with Glanzmann thrombasthenia helped shape Hemab's Phase 3 trial protocolChapters0:00 Welcome to The Human Algorithm0:18 Meet Benny Sorensen1:55 The afternoon that started it all3:16 "The Carrot Seed"5:08 A people company, not a platform company6:26 What patients don't see about a CEO8:15 Lessons from Henri Termeer9:51 Why Benny is "a very unreasonable human being"14:33 When persistence turns into stubbornness15:39 What the textbooks don't teach17:12 Reimagining life with a rare disease19:28 How patients can make their voices count22:01 Patients in the protocol "war room"25:43 One idea to take away28:01 Thank youAbout The Human AlgorithmThe Human Algorithm is a podcast from trialport about the people behind rare disease research. Each episode features patient advocates and leaders of rare disease organizations. They talk about living with rare conditions, building community, and making clinical research work for patients and families.About trialportFinding a clinical trial is only the beginning. trialport helps people find the right study, understand what it really means, and decide whether it fits their life, not just their diagnosis. Understanding comes first. Decisions follow.Explore clinical trials: https://app.trialport.comLearn more: https://trialport.comLinkedIn: https://www.linkedin.com/company/trialport/Instagram: https://www.instagram.com/mytrialportTikTok: https://www.tiktok.com/@mytrialportThis episode is for educational purposes only and is not medical advice. Guests' views are their own.#RareDisease #ClinicalTrials #TheHumanAlgorithm

  4. Trailer

    TEASER - Plant the Seed: Benny Sorensen on Building Medicine Around People | The Human Algorithm by trialport

    What does it take to build medicine around people, not technology? Benny Sorensen, MD, PhD, CEO of Hemab Therapeutics, joins The Human Algorithm to share 25 years of "watering the seed" for people living with rare bleeding disorders.It started with one afternoon in a coagulation lab in Denmark. A professor handed a medical student the keys, told him to learn to take his own blood, and sent him to listen to patients' stories. Benny left determined to help them, and he's still at it.

    TEASER - Plant the Seed: Benny Sorensen on Building Medicine Around People | The Human Algorithm by trialport
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Trailer

About

The Human Algorithm is a podcast from trialport about the people behind rare disease research. Each episode features patient advocates and leaders of rare disease organizations. They talk about living with rare conditions, building community, and making clinical research work for patients and families.

Information

  • Creator
    trialport
  • Years Active
    2026
  • Episodes
    4
  • Rating
    Clean
  • Copyright
    © trialport
  • Show Website
    The Human Algorithm