Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Taylor Kane, founder and executive director of 'Remember the Girls.' The charity advocates for female carriers of X-linked rare disorders including Duchenne muscular dystrophy and hemophilia.By Rare Care Podcast

For Part 3 of our event medicine podcast, University Hospitals of Cleveland's Manager of EMS and Community Outreach, Laura Frost, RN continues to discuss resources. The key topic is, how do you get in touch with your supplemental resources when you need them? And stay tuned for our live episode...it will be from the Canfield Fair!…

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews neurologist Jeffrey A. Cohen, MD, of Ohio's Cleveland Clinic on the latest developments in cellular therapies to treat multiple sclerosis.By Rare Care Podcast

University Hospitals of Cleveland's Manager of EMS and Community Outreach, Laura Frost, RN continues to discuss the logistics of preparation and planning of event medicine. This includes familiarizing all of the event medical staff with how to access primary drugs and equipment as well as how to access supplemental support such as transportation an…

By Rare Care Podcast

University Hospitals of Cleveland's Manager of EMS and Community Outreach, Laura Frost, RN joins the full crew to discuss event medicine planning and execution. From small community picnics to high school graduations to large national events, planning is the key. This month's discussion emphasizes pre-event assessment, logistical planning and patie…

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jacquelyn Bainbridge, DPharm, a neurology professor at the University of Colorado in Aurora, on the benefits of medical cannabis in treating multiple sclerosis.By Rare Care Podcast

As you already know, in the months when we have a 5th Monday, we have an extra airway series episode. This month, the team is talking Laryngoscopy. Be sure to head to our Prehospital Paradigm Podcast YouTube channel to see the team demonstrate each of the skills discussed on this extra episode.By University Hospitals of Cleveland EMSi

By Rare Care Podcast

This is the final episode of our "Neonatal Resuscitation for EMS" series. We were joined by Arielle Olicker, MD. Thanks to the Willoughby Fire Department for hosting this month's live show. If you would like to host one of our live shows, message us! In addition to providing clinical care in the NICU, Dr. Olicker is part of the team providing follo…

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Flavia Nelson, MD, director of the Multiple Sclerosis Center of Excellence at the University of Miami in Florida, on the difficulties of diagnosing neuromyelitis optica spectrum disorder.By Rare Care Podcast

The crew and Dr. Olicker continue the conversation of undersstanding the neonatal patient, equipment, protocols and emotions. They start to wrap up the discussion in Part 3 as they prepare for the live podcast!By University Hospitals of Cleveland EMSi

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Kevin M. Flanigan, MD, director of the Center for Gene Therapy at the Abigail Wexner Research Instute of Nationwide Children’s Hospital in Columbus, Ohio. The subject of our talk is exon skipping therapies for Duchenne muscular dystrophy.…

Dr. Olicker is still with the team for Part 2. The team discusses the decision of transporting a neonate patient to the closest hospital vs. a facility with inhouse neonatal specialty care services as well as complications with the ductus arteriosus as well as the difficult decision of determining a the viability of a neonatal patient's viability f…

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Durresamin Khan, the Pakistani mother of a boy with Duchenne muscular dystrophy, about the difficulties of obtaining treatment for DMD patients who are ineligible for gene therapy.By Rare Care Podcast

Dr. Ariel Olicker, the medical director for Neonatal Critical Care Transport, joins the team for some practical conversation about understanding and being more comfortable with neonatal patients. Since traditional EMS doesn't encounter these patients regularly, the goal is to simplify understanding this patient category.…

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jenny Huang, whose son, Benjamin Lou, is an award-winning math major at MIT who also has spinal muscular atrophy.By Rare Care Podcast

This month, we were live from the Chagrin Valley Fire Department. We discussed air medical care with Kyle Schnarrs, Flight Nurse, and Nathan Brazytis, Flight Paramedic, from the UH AirMed critical care transport system. We talk how to become a flight paramedic/nurse, day-in-the-life, as well as just how much goes on in preparation for flight, plus …

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Omer Abdul Hamid, MD, a neurologist at Nemours Children's Hospital in Orlando, Florida, on gene therapy's potential to treat Duchenne muscular dystrophy.By Rare Care Podcast

In Part 3 of our discussion with crew members of UH AirMed, They wind up the recorded sessions discussion catching up on loose ends of the discussion, cricothyrotomy, laryngoscopy, the various drugs the helicopter carries and the use of blood on the aircraft.By University Hospitals of Cleveland EMSi

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Pamela Gavin, the newly appointed CEO of the National Organization for Rare Disorders (NORD).By Rare Care Podcast

UH MedAir's Kyle Schnarrs, Flight Nurse and Nathan Brazytis, Flight Paramedic continue to talk about the airmedical transport system. First, they address the medical brief that can be helpfu to the communications specialists and the flight crew, distinctions between VFR flying and IFR flying for the crew, patients needing LVAD transportation as wel…

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Patricia Weltin,founder and CEO of Beyond the Diagnosis—a nonprofit that uses art to raise public awareness of children with ultra-rare diseases.By Rare Care Podcast

This month, we welcome Kyle Schnarrs, Flight Nurse and Nathan Brazytis, Flight Paramedic from the UH AirMed critical care transport system. In the first of a 4-part series, they discuss how to become a flight paramedic/nurse as well as answer many questions about air medical transport including a day-in-the-life-of!…

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sarah Glass, PhD, chief operating officer of the n-Lorem Foundation—and the mother of a boy with an ultra-rare disease.By Rare Care Podcast

This month we discuss field termination and DOA situations with Dr. Donald Spaner. We will dive into what the medical control physician is looking to hear from the field provider's report, the importance of the care of the family members on scene, and DNRs. Recorded at the Madison Township Fire Department.…

By Rare Care Podcast

In this 3rd part of our discussion of field termination of care and DOA situations, the crew and Dr. Spaner talk about the Do Not Resuscitation situations. DNR does NOT mean do NOTHING! Anything that gives the patient comfort can be utilized on a patient under a DNR order.By University Hospitals of Cleveland EMSi

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Mary Morlino, who has sarcoidosis and is the patient navigator for the Undiagnosed Diseases Network Foundation.By Rare Care Podcast

The discussion of EMS field termination of care and DOA situations continues with Dr. Don Spaner. More actual cases are discussed as peer review including BLS termination of care. "When in doubt, start resuscitation." Also, part of the profession of being an EMS provider is learning how to discuss field termination of care with the family on scene.…

By Rare Care Podcast

The team gathers with Dr. Donald Spaner joins for a discussion of field termination and DOA situations. This discussion includes a review of actual cases as a peer review. Part 1, what the medical control physician is looking to hear from the field provider's report.By University Hospitals of Cleveland EMSi

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As you already know, in the months when we have a 5th Monday, we have an extra airway series episode. This month, the team is talking blind-insertion airways. Interesting note, even anesthesia prefer a supraglottic airway device over intubation in short cases. Be sure to head to our Prehospital Paradigm Podcast YouTube channel to see the team demon…

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Israeli expert Avner Reshef, MD, director of the Allergy, Immunology, and Angioedema Center at Barzilai University Medical Center in Ashkelon, only a few miles from the border with war-torn Gaza.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews pediatric neurologist Edward Smith, MD, about the recent approval of vamorolone, a synthetic corticosteroid, in boys with Duchenne muscular dystrophy.By Rare Care Podcast

The podcast is on the road at Kent Fire Department. Dr. Stephanie Gaines and Jennifer Moreland, RN and Sexual Assault Nurse Examiner (SANE), hit the road with us to go live!By University Hospitals of Cleveland EMSi

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sharon Hesterlee, PhD, chief research officer at the Muscular Dystrophy Association, about the recent proliferation of gene therapies and other treatments for neuromuscular diseases.By Rare Care Podcast

As an EMS provider, what is the proper language with which to approach a possible domestic violence or sexual assault? The crew also discusses situations that may be 'hot" situations of active violence as the crew determines once on scene. The crew needs to have an excellent sense of intuition in these cases.…

This part of the discussion reviews what happens when your intuition is telling you to suspect a domestic violence situation but the patient doesn't seem to want to participate in that conversation?By University Hospitals of Cleveland EMSi

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ira Walker, the Muscular Dystrophy Association's 2024 National Ambassador, at the MDA's 2024 Clinical & Scientific Conference in Orlando, Florida. Walker, 39, has spinal muscular atrophy (SMA) type 2.By Rare Care Podcast

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Seema Lalani, MD, of Baylor College of Medicine in Houston, Texas. Dr. Lalani directs Project GIVE (Genetic Inclusion by Virtual Evaluation), a pediatric screening program in the impoverished 4-county Rio Grande Valley region of southern Texas.…

This month we are joined by Dr. Stephanie Gaines and Jennifer Moreland, RN and Sexual Assault Nurse Examiner (SANE), to overview sexual assault cases and the appropriate responses. In 2021, Dr. Stephanie Gaines was appointed as the Inaugural Director of the Blair Dickey-White Sexual Assault Survivor Program, formally known as the Adult Sexual Assau…

This is the final part of our "Psychiatric Emergencies" episode. We discuss psychiatric emergencies and even address physical vs. chemical restraint with Dr. Jordan Singer. We recorded live at the Richfield Fire Department.By University Hospitals of Cleveland EMSi

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Matt Trudeau, head of ITF Therapeutics—a division of Italy's Italfarmaco—on treating Duchenne muscular dystrophy with givinostat, a histone deacetylase inhibitor.By Rare Care Podcast

When alcohol and substance abuse is involved, it can make the difficult to judge the patient's capacity to refuse treatment. By the way, dementia itself does not steal a patient's capacity to refuse treatment. When does the POA decision overrule the patient's decision? The crew also goes through a number of real-life scenarios to help bring this to…

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Thomas Holm Pedersen, PhD, cofounder and chief executive of NMD Pharma, a Danish company that's pursuing the use of chloride channel 1 (ClC-1) as a novel target for restoring muscle function in both myasthenia gravis and spinal muscular atrophy.…

The topic of soft restraints starts this episode with our guest Dr. Singer. No need to "MacGyver" some type of soft restraints. If you do any restraining, restrain all 4 points. A goal of restraining would be to minimize the patient's chance of injury but maximize proper ventilation.By University Hospitals of Cleveland EMSi

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Courtney Silverthorn, MD, of the Foundation for the National Institutes of Health (NIH) about the NIH's Bespoke Gene Therapy Consortium.By Rare Care Podcast

This month, we talk about psychiatric emergencies. We even address physical vs. chemical restraint and actual cases with Dr. Jordan Singer who is back with us for the third time.By University Hospitals of Cleveland EMSi