Bendy Bodies with Dr. Linda Bluestein

What if your hand pain, numbness, weakness, or grip problems aren’t actually coming from your hand or wrist? Orthopedic hand surgeon William Ericson, MD, joins Dr. Linda Bluestein to explain why people with Ehlers-Danlos syndrome (EDS) and hypermobility may experience overlooked median nerve entrapment near the elbow, carpal tunnel-like symptoms, thumb arthritis, and thoracic outlet syndrome—even when standard imaging or nerve testing doesn’t reveal the answer.

Dr. Ericson, co-author of the 2017 American Journal of Medical Genetics article on orthopedic management of the Ehlers-Danlos syndromes, shares what he has learned from more than three decades of treating patients with complex upper-extremity symptoms.

Why can someone have significant hand pain, weakness, numbness, tingling, or loss of grip strength even when imaging or standard nerve testing looks normal? Dr. Ericson describes a pattern of proximal median nerve entrapment near the elbow that he believes is extremely common in people with EDS and may frequently be mistaken for carpal tunnel syndrome, tendonitis, or unexplained pain.

He explains how median nerve dysfunction can change the way the hand pinches and grips, potentially placing excessive stress on the thumb and contributing to thumb arthritis over time. He also discusses whether identifying and treating the underlying nerve problem could help reduce that risk.

The conversation expands beyond the hand and wrist to the relationship between hypermobility, shoulder instability, scapular protraction, and thoracic outlet syndrome. Dr. Ericson explains why improving shoulder and scapular mechanics may sometimes be more important than operating directly on the thoracic outlet.

You’ll also hear an important discussion about cortisone injections in EDS and hypermobility, including why injections may be appropriate for true tendon inflammation but potentially problematic when the underlying issue is joint instability.

Just as importantly, Dr. Ericson explains why he evaluates the whole person before recommending surgery—including posture, shoulder mechanics, thoracic outlet involvement, stress, and mental health—and why persistent symptoms after surgery may sometimes reflect an unrecognized problem farther upstream.

The episode closes with advice for anyone living with symptoms that have been difficult to explain: a good clinician does not have to know everything. Sometimes the most important words a healthcare professional can say are, “I don’t know—but I believe you, and I’ll help you figure out what comes next.”

Want more of Dr. William Ericson?

Website: https://www.williamericsonmd.com/

Ericson Hand and Nerve Center: https://ericsonhand.com/

Want more Dr. Linda Bluestein, MD?Website: https://www.hypermobilitymd.com/YouTube: https://www.youtube.com/@bendybodiespodcastInstagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymdDr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.orgUVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinicUVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

Part of the Human Content Podcast Network

Go http://www.AquaTru.com now for 20% off (your purifier) using promo code BENDY.

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Chapter:
00:00 Median Nerve Shocker00:29 Meet Dr Erickson01:47 Why He Focuses on EDS06:14 Listening Changed Everything13:52 Common Upper Extremity Complaints19:58 Median Nerve Elbow Explained25:06 Misdiagnosis and Thumb Arthritis28:16 Surgery Decision Protocol31:30 Ergonomics and Tool Hacks33:09 When Surgery Makes Sense33:57 Thoracic Outlet Surgery Risks35:29 Scapular Protraction Fix38:26 Red Flags Before Operating45:24 Activities That Trigger Symptoms47:30 Best Exercises for EDS50:05 Clinician Pitfalls and Wrap-Up

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Patients are already asking AI the questions they cannot always ask their doctors.

That creates enormous opportunity, but also real risk. AI can help people organize complex medical information, prepare for appointments, and better understand their health. It can also sound completely certain when the evidence is weak or the answer is wrong.

In this live episode of Bendy Bodies, host Dr. Linda Bluestein speaks with Michael Turken, MD, an internist at UCSF and founder of My Doctor Friend, an AI health companion designed to support patients navigating medical complexity.

Dr. Turken explores the growing gap between what patients need from healthcare and what traditional systems can realistically provide, especially between appointments. He explains where AI may help fill that gap, where it can go wrong, and why these tools should support rather than replace the patient-physician relationship.

The conversation includes practical strategies for connecting medical records to AI platforms, checking what an AI model actually understands about your health history, keeping that information accurate and current, and recognizing situations where AI may be less reliable, particularly when the science itself is still evolving.

Takeaways:

AI chatbots are not healthcare providers, and many are not subject to HIPAA protections in the same way healthcare organizations and covered entities are.

AI can sound highly confident even when its answer is incomplete, overly reassuring, or wrong. The conversation includes discussion of AI sycophancy, in which a model may reinforce a user’s assumptions or provide reassuring responses rather than appropriately challenging them.

If you connect your medical records to an AI platform, periodically ask it to summarize what it believes about your diagnoses, medications, major medical events, and current health history. This can help uncover outdated, missing, or incorrect information.

AI may be particularly useful in addressing the gap between what patients want from healthcare, such as the ability to ask questions at any hour, organize complex information, and prepare for appointments, and what traditional healthcare systems can currently provide.

For medically complex patients, the quality of an AI answer depends heavily on the quality, completeness, and accuracy of the information the model is using.

To get 2 months of Premium access to My Doctor Friend, use code "BENDY"

Want to learn more about My Doctor Friend?

Website: https://about.mydoctorfriend.ai/

Instagram: @mydoctorfriend.ai

Want more Dr. Linda Bluestein, MD?
Website: https://www.hypermobilitymd.com/
YouTube: https://www.youtube.com/@bendybodiespodcast
Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠
Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠
X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠
LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠
Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/
Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd
Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.org
UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic
UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

Part of the Human Content Podcast Network

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Chapter:

00:00 AI as Malpractice00:28 Welcome and Guest Intro01:20 Boutique Sponsor Break01:54 Why Build My Doctor Friend05:52 Choosing AI Platforms07:15 Record Linking Pitfalls09:21 Always Ask What It Knows12:35 Three Models for Safety15:50 Privacy Reality Check19:29 Reassurance Trap Lawsuit21:47 Making One Model a Jerk23:27 Urgent Care MRI Story27:18 Fixing Sycophancy Prompts32:12 Doctors React to AI35:26 Avoiding AI Misinformation38:51 Privacy and Medical Records41:46 Finding EDS Savvy Doctors46:24 Talking AI With Your Doctor48:46 My Doctor Friend Demo55:31 AI in Medicine Next 5 Years58:41 Carbon Footprint and Wrap Up

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What happens when doctors misunderstand Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD)? Sometimes the consequences go far beyond frustration or delayed treatment.
In this episode of Bendy Bodies with the Hypermobility MD, Dr. Linda Bluestein is joined by Dr. Ina Stephens, Associate Director of the UVA Health EDS and Hypermobility Disorder Center, to answer listener questions about MCAS, gut health, circadian rhythm, migraine, pediatric hypermobility, and more.

They also confront a disturbing reality for some families navigating poorly understood conditions: medical gaslighting, misdiagnosis, and inappropriate Munchausen-by-proxy referrals.

Can you support a healthy gut microbiome with MCAS if fermented foods trigger symptoms? Drs. Bluestein and Stephens discuss the role of dietary fiber, polyphenol-rich foods, exercise, and thoughtful antibiotic use, including why the narrowest effective antibiotic may be preferable when treatment is necessary.

They also explain why resetting a disrupted circadian rhythm involves more than simply going to bed earlier, and how morning light exposure can help shift the body’s internal clock.

Then the conversation turns to migraine management in hypermobile patients. Dr. Stephens shares her approach to supplements and medications, including magnesium glycinate, CoQ10, and CGRP-targeting medications such as ubrogepant (Ubrelvy,) while explaining why Botox (onabotulinumtoxin A) is not usually a first-line migraine treatment and may be problematic for people with significant craniocervical instability.

The episode also tackles a question with major implications for the next generation: Should children be evaluated for hypermobile EDS earlier (hEDS)? Dr. Stephens explains how delayed recognition can contribute to years of orthopedic problems, psychological distress, inappropriate diagnoses, and missed opportunities for prevention and support.

Finally, the episode closes with a Hypermobility Hack on low dose naltrexone (LDN): how it may work, why benefits can take time to appear, and why patience matters when evaluating whether it is helping.

Takeaways:

Could the wrong antibiotic choice create problems long after the infection is gone?

Why might morning sunlight matter more than forcing yourself to go to bed earlier?

When could Botox actually make headaches and neck symptoms worse in someone with hypermobility?

How can missed or delayed recognition of hEDS in childhood affect orthopedic and mental health outcomes years later?

What happens when physicians misunderstand EDS so profoundly that a family is suspected of fabricating illness?

Why can low dose naltrexone seem like it is “not working” before it has had enough time to take effect?

Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.org
UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic
UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Want more Dr. Linda Bluestein, MD?
Website: https://www.hypermobilitymd.com/
YouTube: https://www.youtube.com/@bendybodiespodcast
Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠
Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠
X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠
LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠
Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/
Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd
Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

Part of the Human Content Podcast Network

Go http://www.AquaTru.com now for 20% off (your purifier) using promo code BENDY.

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links.

Chapters:
00:00 EDS Starts Early00:34 Meet Dr Ina Stephens02:12 Fermented Foods MCAS02:39 Microbiome Support Basics10:47 Antibiotics Probiotics15:49 Medical Distrust CPS Risk29:31 Migraine Treatments Botox41:16 Feverfew Dosage Basics41:30 Avoiding Rebound Headaches43:12 CGRP Rescue Meds Explained44:51 Why Diagnose EDS Early49:05 Early Intervention and Prevention56:42 Parenting Tips and Clinic Access01:06:54 LDN Patience and Closing Resources
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Why can you feel almost functional one day and completely wrecked the next with hypermobile EDS, HSD, POTS, or MCAS? And how do you know whether you need more treatment, more rest, more movement, or an entirely different approach?

In this special episode of Bendy Bodies with the Hypermobility MD, producer Aron Korney turns the tables on Dr. Linda Bluestein, asking questions submitted by the hypermobility community about some of the most frustrating and misunderstood parts of living with hypermobile Ehlers-Danlos syndrome (hEDS), hypermobility spectrum disorder (HSD), mast cell activation syndrome (MCAS), POTS/dysautonomia, joint instability, chronic pain, and related conditions.

Dr. Bluestein breaks down why symptoms can fluctuate so dramatically from day to day and explains the physiology that may be driving those changes. Sleep quality, hormones, hydration, immune and mast cell activation, physical activity, cumulative stress, and other factors can all influence how someone feels from one day to the next.

The conversation also tackles something that is rarely discussed enough: the shame, guilt, and self-doubt that can come with unpredictable chronic illness. Dr. Bluestein shares practical ways family members, partners, and friends can offer support without minimizing symptoms, giving advice that wasn’t requested, or assuming they know what the person needs.

They also explore two professionals who are often missing from a hypermobility care team: pelvic floor physical therapists and mental health professionals who truly understand chronic illness.

Drawing from The Book of Questions: Living with Chronic Illness by Brianna Greenspan and Dr. Gregory Stock, Dr. Bluestein discusses a powerful self-advocacy question:

“Despite how I’m feeling in this exact moment, what can I do to best support myself starting now?”

Sometimes the most useful intervention isn’t a complicated new treatment. It may be drinking water, eating something, changing position, putting on compression, asking for help, modifying an activity, or simply doing one small thing that moves you forward.

And then things get rapid-fire.

Dr. Bluestein reveals some of her favorite and most underrated treatments for hypermobility, the misconceptions about joint instability she encounters most often, and what she considers one of the most dangerous myths in EDS and HSD care: that surgery is always the answer for an unstable joint.

They discuss why joint stability is more complicated than ligaments alone, how systemic issues such as mast cell activation may influence symptoms and stability, and why optimizing the entire person before pursuing surgery can matter.

The episode closes with a simple strategy for anyone who feels overwhelmed by a long list of health problems: don’t try to fix everything at once. Start small, build momentum, and keep moving in the right direction.

Whether you’re living with hEDS, HSD, POTS, MCAS, chronic pain, dysautonomia, or another complex connective tissue disorder, this episode offers practical strategies for understanding symptom variability, building a better care team, advocating for yourself, and making progress without needing a perfect plan.

Want more Dr. Linda Bluestein, MD?
Website: https://www.hypermobilitymd.com/
YouTube: https://www.youtube.com/@bendybodiespodcast
Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠
Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠
X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠
LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠
Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/
Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd
Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

Part of the Human Content Podcast Network

Go http://www.AquaTru.com now for 20% off (your purifier) using promo code BENDY.

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Chapters:

00:00 Fatigue Battery Analogy

01:15 Episode Goals and Community

04:08 Family and Friends Variability

06:26 Why Symptoms Fluctuate

12:26 Spoon Theory and Energy

15:14 Supportive Accommodations

30:38 Care Team Unsung Heroes

33:24 Micro Massive Self Support

36:38 AI Tools And Privacy

38:55 Rapid Fire Myths And Treatments

47:36 One Next Step Hack

53:20 Goodbye And Final Resources

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What if some of the most disabling symptoms in EDS, HSD, POTS, MCAS, ME/CFS, and long COVID are being driven by something we still struggle to see on standard testing?

In this episode of Bendy Bodies, Dr. Linda Bluestein is joined by guest co-host Dr. Ina Stephens, Associate Director of the UVA Health EDS and Hypermobility Disorder Center, along with Brain Inflammation Collaborative co-founder Christy Jagdfeld and neuroscientist Dr. Megan Fitzgerald. Together, they explore the rapidly evolving science of brain inflammation, including what it actually means, how it differs from conditions like encephalitis or brain edema, and why it may matter in complex multisystem illness.

The conversation dives into microglial activation, mast cell involvement in the central nervous system, and the challenge of detecting subtle neuroinflammation in living patients. The guests also discuss emerging research tools, including ultra-high-field MRI, PET ligands, and blood-based extracellular vesicles, that may eventually give clinicians a clearer window into what is happening inside the brain.

The group also takes a closer look at the Brain Inflammation Collaborative's Unhide platform, which is collecting real-world, patient-reported data across more than 30 overlapping chronic conditions, including EDS, POTS, MCAS, ME/CFS, and long COVID. Early findings raise important questions about quality of life, symptom burden, the limitations of the Beighton score, and why pediatric research may be especially important.

The episode closes with practical implications, including why pacing matters when exercise can worsen symptoms rather than improve them, and what patients and clinicians should watch as this field moves forward.

Note: Technical difficulties knocked Dr. Linda Bluestein offline halfway through the taping; thankfully, Dr. Ina Stephens carried the rest of conversation.

Takeaways

“Brain inflammation” can involve subtle processes such as microglial activation and mast cell signaling that may not appear on routine MRI or CT scans.

Emerging tools such as ultra-high-field MRI, PET imaging, and blood-based extracellular vesicles may eventually help researchers detect and track neuroinflammation in living patients.

The Unhide platform has collected real-world data from thousands of participants with overlapping chronic conditions, offering a new way to study symptom burden and quality of life outside traditional clinical trials.

The Beighton score may not reflect functional severity or symptom burden, highlighting the need for better ways to assess hypermobility over time.

Want more of the Brain Inflammation Collaborative?

https://www.unhidenow.org/
https://www.braininflammation.org/

Want to learn more about the UVA EDS Center?

For Appointments and Questions: RUVAEDSCenter@uvahealth.org
UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic
UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq

UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health

Want more Dr. Linda Bluestein, MD?
Website: https://www.hypermobilitymd.com/
YouTube: https://www.youtube.com/@bendybodiespodcast
Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠
Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠
X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠
LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠
Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/
Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd
Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠.

YOUR bendy body is our highest priority!⁠⁠

Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠

Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠

Part of the Human Content Podcast Network

Go to AirDoctorPro.com and use promo code BENDY_ to get UP TO $300 off today!

FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links

Chapters:
00:00 Beighton Score Debate00:28 Meet the Guests02:54 Why BIC Was Founded07:22 Defining Brain Inflammation09:44 Biomarkers and Imaging Advances18:12 Unhide Platform and Real World Data25:55 Comorbidities and Survey Cadence31:40 Survey Fatigue Solutions32:49 Tools Beyond Beighton34:16 Research Priorities Wish List35:41 Biomarkers EVs Immune Profiling38:37 Pediatric Focus Early Signs46:34 Building Pediatric Platform53:07 Hacks Resources And Wrap Up
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