Not Just Patients

🎂 Not Just Patients is turning 1! 🥳 To celebrate our First Anniversary, we will be having a very special LIVE Podcast Takeover with Joel Nelson. Join us on World Health Day, the 7th of April, when our star Guest Host Joel will put Caitlin and Clarinda in the hot seat and ask them tough and fun questions about themselves and the year that has been. An award-winning patient advocate who uses his story of psoriatic-associated juvenile idiopathic arthritis to inspire change, Joel is the Founder of Psoriatic Disease UK. He also hosts The Joel Nelson Podcast and The Chronic Pain Club Talk Show, where he facilitates conversations to help build a global community of peer support and awareness for patients and carers dealing with chronic conditions. This live chat promises to be warm, fuzzy, and just the #Mondaymotivation you need. #patientengagement #patientadvocacy #patientinvolvement #podcast #chronicpain #anniversary #healthcare EUPATI Barry McGrath, PhD, EUPATI Fellow Robert Joyce Elena Mills Katell Maguet Tamás Bereczky PhD Bronwyn Lewis Victor Montori Avishek Pal Anke-Peggy Holtorf Mark Duman MRPharmS Professor Lara Bloom, CNE Lilly Stairs Jo Balfour Danielle Drachmann Sumaira Ahmed Maya Zlatanova Ebony Anchelle Buehler

5 DAYS TO GO! Join us: https://lnkd.in/dMDTccUh [Sound On 👇]

Did you know that more than 50% of people in the US live with a chronic condition? During Women’s History Month and Autoimmune Awareness Month, we couldn’t think of a more fitting guest than the wonderful Lilly Stairs! Lilly is the Founder of Patient Authentic, a boutique consultancy that helps healthcare organizations build events and experiences for patient advocates, and the Chronic Boss Collective, a networking membership for ambitious business women living with chronic conditions. Join us as we discuss the challenges of navigating professional life for people living with chronic illnesses, the value they can bring with their ‘secret sauce’, and how employers can cultivate a more inclusive and supportive environment that allows people with chronic illnesses to thrive in their careers. This post has a very wide relevance for employers across sectors, so have a listen! Available wherever you get your podcasts: Website: https://lnkd.in/eit-Uj7T Spotify: https://lnkd.in/eQyhqZRp Apple: https://lnkd.in/eZ2Ggkka YouTube: https://lnkd.in/eRDRmTqw Michelle Irving Keely Cat-Wells Michelle Marikos Joel Nelson Edmund Lau (勞梽豪) Samantha Sauer, BCPA Emma Rogan Autoimmune Association Brain Cancer Research Alliance Chronically Capable Making Space Disability:IN #internationalwomensday #womenshistorymonth #autoimmuneawarenessmonth #chronicillness #autoimmune #chronicdiseases #worklifebalance #remotework #workplaceaccommodations #patientadvocacy #patientengagement #professionalism #diversityandinclusion

🦓 Our #RareDiseaseDay special episode is here! 🎙️ Our hosts Caitlin and Clarinda are proud to show their stripes as rare disease patients. What are the barriers to rare disease research? There are many, as you’ll find out in this very insightful episode with our special guest Jo Balfour. One important barrier is the lack of a patient-centred approach, which can lead to failures at the regulatory approval stage and billions of research dollars lost. Jo is Managing Director of the Cambridge Rare Disease Network (CamRARE) and Co-Founder of the Rare Disease Research Network (RDRN). Join us as we discuss overcoming barriers to rare disease research and the value of collaboration between researchers and rare disease patient organisations. Listen on our website or wherever you get your podcasts. Website: https://lnkd.in/eit-Uj7T Spotify: https://lnkd.in/gv8hVDmA Apple podcasts: https://lnkd.in/gKYknbtw Youtube: https://lnkd.in/gBwahszJ Duchenne UK RARE DISEASES INTERNATIONAL Global Genes EURORDIS-Rare Diseases Europe Genetic Alliance UK Cystic Fibrosis Trust Ring20 Research & Support UK CIO - your organisations all been mentioned and referenced in this conversation. Mary Morlino, Bojana Mirosavljevic, Anne Danford Micks, Kris Pierce, Lisa Reilly, Juliane Mills Rita Laila Fussenegger, Sophia Zilber 🌺, Parvathy Raman Krishnan, Vlada Davydova, Danielle Drachmann, Rachel Smith, Alexandra Heumber Perry, Jessica Klein, Harsha K Rajasimha - We think you'll find this episode interesting and aligned with your work. #raredisease #rarediseases #rarediseaseresearch #showyourstripes #healthcare #pharma #patientorganisations #patientadvocacy #patientadvocates #podcast

We urgently need better care for a larger number of patients. The way to achieve this? Efficient, patient-aligned clinical trials that aim to find meaningful treatments for patients, faster! Listen to this fascinating conversation we had with Maya Zlatanova, CEO and Co-founder of FindMeCure Foundation and TrialHub, where we discuss the value of patient-aligned clinical trials. During this episode of Not Just Patients, we also talk about the barriers to accessing clinical trials, the importance of awareness and education, and the benefits of improving clinical trial design to enhance patient experience. Available on our website or wherever you get your podcasts: Website: https://lnkd.in/eit-Uj7T Spotify: https://lnkd.in/eFQz95_M Apple: https://lnkd.in/dEBUXQdK YouTube: https://lnkd.in/dqFWn6J6

📢 NEW EPISODE! How do you feel about the term ‘patient-centric’? Listen to the latest episode of Not Just Patients to learn why Maya Zlatanova, CEO and Co-founder of FindMeCure FindMeCure Foundation and TrialHub, HATES the use of this term when referring to clinical trials. Join us as we discuss barriers to accessing clinical trials, the importance of awareness and education, and the benefits of improving clinical trial design to enhance patient experience. Available on our website or wherever you get your podcasts: Website: https://lnkd.in/eit-Uj7T Spotify: https://lnkd.in/dVbbaTQE Apple: https://lnkd.in/dEBUXQdK YouTube: https://lnkd.in/dqFWn6J6 Sophie Ivanova Robert Joyce Lori Leathers, MS Wei Zhang Mary Burke Uhlenhopp Mark McCully Daniela Morales Espinosa Lisa Reilly Isha Chopra Wendy Erler Ann M. Richardson, MBA Holger Bartos Bronwyn Lewis Vanessa Boulanger 🇨🇦🇺🇸 #clinicaltrials #patientexperience #patientcentricity #patientcentrictrials #clinicaltrialdesign #pharma #healthcare

Happy New Year from Not Just Patients! We are already in full swing planning and recording some fantastic episodes for 2025 - it's going to be an exciting year 😃 In the meantime, all our 2024 episodes are still available to listen to on your favourite podcast streaming platforms. For example, check out this fantastic episode with the wonderful Professor Lara Bloom, CNE, where we discuss DE&I in healthcare and the powerful role that patients organisations can play in ensuring strong well-rounded representation. - Spotify: https://lnkd.in/ekXAerdq - Apple: https://lnkd.in/ep7t5AHX - Youtube: https://lnkd.in/dnf5AUx7 #diversity #equity #inclusion #healthequity #dei #ehlersdanlos #patientgroups #patientorganisations #patientinclusion #patientengagement #patientadvocacy #podcast The Ehlers-Danlos Society Cystic Fibrosis Trust The Sumaira Foundation EUPATI Caitlin Rich Clarinda Cerejo

Nothing warms our hearts more than receiving messages from perfect strangers telling us that they love listening to our podcast. We couldn't have asked for a more special note on the last day of 2024. Cheers to all of you who make us Not Just Patients! Happy New Year! Here's to lots more wonderful conversations through 2025. 🥂 Love, Caitlin and Clarinda 💜

Thanks so much to all our guests and followers for accompanying us on the wild ride that was 2024! We already have 3 recordings scheduled in January so we're going to take all the rest we can get now. 😊 Hope you all have a chance to enjoy some down time with your loved ones too. Have a joyful and peaceful year end and a very Happy New Year 2025! - Caitlin and Clarinda

Did you catch our livestream last week? Don't worry if you missed it (or want to listen again)! The video recording is still available through the event link below, or you can download it from your favourite podcast streaming platform 🎙️ Listen to our conversation with the incredibly inspiring Danielle Drachmann and Sumaira Ahmed as they share how they turned their adversity into advocacy and discuss the unspoken realities of their deeply personal work. Website: https://lnkd.in/eit-Uj7T Spotify: https://lnkd.in/e5VM4xmi Apple: https://lnkd.in/e--QtgxE #patientengagement #patientadvocacy #patientadvocates #patientinvolvement #healthcare #podcast #raredisease #nmosd #mogad #ketotichypoglycemia Caitlin Rich Clarinda Cerejo