Najlepsze podcasty z kategorii: Mcfarland Clinic (2024)

Please visit the Rare Patient Voice website for more information, or reach out to Lauren Holder at lauren@help4hd.org WES MICHAEL Founder and President, Rare Patient Voice Wes Michael founded Rare Patient Voice in 2013 to give patients and family caregivers the opportunity to voice their opinions through taking part in research studies. Rare Patien…

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Breaking Down Barriers: A Conversation Around Access with HDYO 1:16:00

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1M ago1:16:00

1:16:00

Lauren Holder recently did a webinar with HDYO's Jenna Heilman, Prof. Hugh Rickards, and HDYO Ambassador Molly about breaking down barriers when it comes to access to a potential treatment. You can watch the full video here: https://www.youtube.com/watch?v=y6CrrVGfBTk Breaking Down Barriers is sponsored by Roche, Sage Therapeutics, Teva Pharmaceuti…

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Our Lived Experience (Panel from Help 4 HD Symposium) 32:00

1M ago32:00

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Our Lived Experience (Panel from Help 4 HD Symposium)Autor: Help4HD

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Are You Prepared for a Disaster? 35:00

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Helpful information on being prepared for a disaster: https://www.ready.gov/disability Information about FEMA: https://www.disasterassistance.gov/ Here are some tips for people with disabilities to prepare for disasters: Make a plan Create a network of people who can help you in an emergency, and keep their contact information in a safe place. You …

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HD Uncut: Thoughts from Strasbourg 29:00

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HD Uncut: Thoughts from StrasbourgAutor: Help4HD

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End of Life: The Caregiver Perspective, Part 2 42:00

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End of Life: The Caregiver Perspective, Part 2Autor: Help4HD

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UF Fixel Institute for HD Patients with Dr. Nick McFarland 24:00

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For more information about the UF Fixel Institute located in Gainesville, FL, please click here.Autor: Help4HD

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HDYO Ambassador: Molly 23:00

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HDYO Ambassador: MollyAutor: Help4HD

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We are at War with HD 29:00

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To read the blog post BJ Viau wrote, please click hereAutor: Help4HD

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HDYO Ambassador: Gemma 52:00

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HDYO Ambassador GemmaAutor: Help4HD

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HD Uncut: Being Gene-Positive & a Scientist 47:00

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"Bri" joins me to discuss what it's like being gene-positive for HD and a scientist doing HD research.Autor: Help4HD

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End of Life: The Caregiver Perspective 25:00

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End of Life: The Caregiver PerspectiveAutor: Help4HD

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Stronger Together 25:00

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We are Stronger TogetherAutor: Help4HD

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HDYO Ambassadors Series: Carly 16:00

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Please contact Jenna Heilman if you're interested in learning more about the HDYO Ambassadors program.Autor: Help4HD

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HD Genetics & Clinical Trials with BJ Viau 30:00

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Please visit hdgenetics.com for more information.Autor: Help4HD

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HD Uncut with Gina 38:00

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HD Uncut with GinaAutor: Help4HD

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HD Awareness Month Wrap-up with Judy Bradley 27:00

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As a way to wrap up HD Awareness Month, let's #LightItUp4HD on social media tomorrow! Share a video or photo of you with blue and/or purple glow sticks tomorrow. Make sure to use #LightItUp4HDandJHD and/or #2024LightItUp4HD. If you want, also share why you're lighting it up for HD/JHD.Autor: Help4HD

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My Visit with UniQure 12:00

6M ago12:00

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Recap of my visit with UniQure for HD Awareness MonthAutor: Help4HD

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Act for ALS (and HD) with Thom Hart 45:00

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Thom Hart is the Director of Outreach with the Critical Path Institute (C-Path), which is a nonprofit created by the FDA to "improve the drug development process. It operates as a neutral third party to enable scientists from the regulated industry and international regulatory agencies to work together with scientists from academia and patient grou…

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HDYO Ambassadors: Ashley 31:00

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For more information about the HDYO Ambassadors program, please visit www.hdyo.org.Autor: Help4HD

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What I learned at the World Orphan Drug Congress 22:00

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I recently attended the World Orphan Drug Congress in Boston, MA. The audio for this episode is from my YouTube video that you can find here: Dying to LiveAutor: Help4HD

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HD Uncut with Meredith Patterson 1:10:00

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Meredith Patterson is a performing artist, author, and producer whose family was impacted by Huntington's Disease. To learn more about her, please visit her website: https://meredithpatterson.com/ She also has a podcast called "Confessions of an Actress". This week on her podcast, she shared about Huntington's Disease as a way to raise awareness. Y…

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Using Optical Tweezers in HD with Dr. Piere Rodriguez-Aliaga 31:00

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Piere Rodriguez-Aliaga, PhD, is a young investigator whose current HD research is funded by the Hereditary Disease Foundation. He is using a new Nobel Prize-winning technology called Optical Tweezers to study one huntingtin molecule at a time, which allows access to structural information about pathogenic and non-pathogenic huntingtin variants with…

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Cognitive Symptoms & Patient-Reported Outcomes with Dr. Jennifer Petrillo Billet 47:00

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Jennifer Petrillo Billet PhD is an Executive Director and Program Lead for investigational dalzanemdor, or SAGE-718, at Sage Therapeutics. She is responsible for driving the global development strategy, including delivery of the right evidence for key stakeholders including regulators, payers, and providers, and patients. Dalzanemdor is being evalu…

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HDYO Ambassador Series: Rhiannon 35:00

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Please visit www.hdyo.org for more informationAutor: Help4HD

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HD Gratitude Day 8:00

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Please visit the Factor-H website for more information. Please also tune in to the Factor-H YouTube Channel on Saturday 3/23/2024 at 12 pm EST for HD Gratitude Day events in Venezuela.Autor: Help4HD

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Samantha Decker 27:00

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Samantha and I got to participate in a focus group together. Here our thoughts about research and more!!Autor: Help4HD

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HDYO Ambassadors Series: Ep 1. with Robyn 27:00

9M ago27:00

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HDYO Ambassadors Series: Ep 1. with RobynAutor: Help4HD

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HD Uncut, Ep. 12, with John Howard 26:00

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Happy 1st anniversary of the #HDUncut Series on #Help4HDLive! This show is exactly why I came up with the series in the first place. John Howard has Huntington's Disease. He's also a very talented poet. On this show, he shares some new poetry with the HD Community.Autor: Help4HD

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Layers of Love with Dave, Susie and Erika 43:00

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Happy Valentine's Day! Join Erika Boulavsky from HD Reach and Lauren Holder from Help 4 HD in their conversations with Dave and Susie Hodgson about their Layers of Love. Dave and Susie's unique story talks about caring for both of their spouses with HD, how they found each other, and how they continue to support one another while caring for their k…

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"We Exist" with Tanita Allen 27:00

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To follow Tanita Allen, please visit her website: https://tanitaallen.com/ Here is the link to purchase a copy of Tanita Allen's book: We ExistAutor: Help4HD

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DNA Repair in HD with Dr. Joseph Hamilton 28:00

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Please visit the Hereditary Disease Foundation website to find out more information.Autor: Help4HD

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@thehdhun with Charlotte 24:00

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If you'd like to follow Charlotte on social media, please visit her website: https://linktr.ee/thehdhun Instagram handle - @thehdhun TikTok - Click HereAutor: Help4HD

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HD Uncut, Ep. 11, with Dina De Sousa 34:00

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HD Uncut, Ep. 11, with Dina De SousaAutor: Help4HD

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HD Charge with Dr. Jamie Hamilton 39:00

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Jamie L. Hamilton, PhD, is the Director of Clinical Outcome Assessments at CHDI. She led the HD Charge study, which focused on the indirect costs associated with being affected by Huntington's Disease.Autor: Help4HD

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Greater than HD in 2024 27:00

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Greater than HD in 2024Autor: Help4HD

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HD Uncut, Ep. 10 with Leah 50:00

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HD Uncut, Ep. 10 with LeahAutor: Help4HD

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Livable Lives with Christy Dearien 21:00

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If you'd like to follow Christy on social media, you can find her here: Facebook - www.facebook.com/ChristyDearien Instagram - @christydearienAutor: Help4HD

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Welcome to Help 4 HD, Anna Lunsford! 19:00

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If you would like to send your resources and tips and tricks to Anna for our new database, please go to the Help 4 HD website - www.help4hd.org - go to Contact Us and submit. Anna is regularly checking submissions through the website. You can also send it directly to her email at anna@help4hd.orgAutor: Help4HD

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Help 4 HD 2023 with Katie and Katrina 26:00

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For more information about all that Help 4 HD is doing, please visit the website - www.help4hd.orgAutor: Help4HD

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Coping During the Holidays with Melissa W. 55:00

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Coping During the Holidays with Melissa W.Autor: Help4HD

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HD Uncut Series, Ep. 9 34:00

1y ago34:00

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Lauren shares her feelings about the holidays and her recent birthday.Autor: Help4HD

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Vico Therapeutics 23:00

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Dr. Katja Obieglo joins Lauren to talk about the research Vico Therapeutics is doing. To learn more, please visit their website here.Autor: Help4HD

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HD Community Advisory Board with Jenna Heilman 40:00

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If you'd like to learn more about HD-CAB, including how to become a member, please visit the website here. You can also contact Jenna Heilman at jenna@hdyo.org.Autor: Help4HD

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HD Mythbusters: Generation HD2 43:00

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Rita Gandhy is a movement disorders neurologist and comes with over 4 years of experience at Roche/Genentech. Prior to her current work in USMA, Rita led the Study Review Team for a planned tominersen study in late onset Huntington's Disease, being responsible for developing the protocol and study set up. Before USMA, Rita was in the Product Develo…