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. 1d ago

    Patients Are Our North Star: Angela Glading | The Human Algorithm by trialport

    What happens when a lab scientist moves to the patient side of rare disease research? Angela Glading, PhD, Chief Scientific Officer of the Alliance to Cure Cavernous Malformation, joins The Human Algorithm to talk about trading grant deadlines for a different kind of pressure: moving as fast and as responsibly as possible for patients.Angela started studying cerebral cavernous malformation (CCM) as a postdoc and spent two decades in academic research before Alliance CEO Connie Lee asked her to lead the organization's science. She shares what changed once she got to know patients, why she had to let go of needing to understand every detail, and how the Alliance's CureDriver Lab aims to de-risk pharma investment by screening repurposed drugs in CCM models.In this episode:• Seeing the people behind the data• Why patients are the North Star for every research decision• Letting go of academic perfectionism to move faster• Inside the CureDriver Lab: animal and cell models, repurposed drugs, and a resource for industry• How patient advocacy groups keep scientists motivated• Teaching, building trust, and making science accessible to patientsAbout 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 #CCM #TheHumanAlgorithm

  2. 3d ago

    Find Your Why-Power: Jill Goodrich on Dent Disease | The Human Algorithm by trialport

    If there were a 10-inch plank between two tall buildings, what would you cross it for? For Jill Goodrich, the answer is her family. Jill joins The Human Algorithm to talk about finding your "why-power" and how a mother became an advocate for Dent disease.When her family received a Dent disease diagnosis, Jill, a mom of five who homeschooled her children, began connecting with other families through the Rare Kidney Stone Consortium at Mayo Clinic. Before long, Mayo was sending families to her. Dent disease is often missed or misdiagnosed, and for more than a decade Jill has been helping families and teaching doctors how to recognize it.In this episode:• Why we chase the what, the how and the now before the why• The plank thought experiment and finding your "why-power"• What Dent disease is and why it's so often missed• How genetic testing is changing the Dent disease community• Why patients belong at the negotiating table, not just the examination table• "Doctors are not gods," and how patients can help get diagnoses right• Turning the plank into a bridge by assembling your teamAbout 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 #DentDisease #TheHumanAlgorithm

  3. Oct 30

    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

  4. Oct 29

    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

  5. Oct 27

    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

  6. 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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    5 Episodes

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
    6
  • Rating
    Clean
  • Copyright
    © trialport
  • Show Website
    The Human Algorithm