In 2022, we celebrated rare heroes from across the country whose initiative, advocacy, and perseverance make difference in the lives of others - Ryan D. Sheedy, Vivian Fernandez, Annie Ganot, Rachel Sherman, & Emma Borreggine. Read about why our heroes were inspired to take action and how they are working to raise awareness and support those who are living with a rare disease and those who are researching treatments and solutions: https://lnkd.in/e_BWTQu5 Bonus! 🌟 Two of our heroes from 2022, Emma and Ryan joined us on The Mix Tape podcast, you can find their episodes here: https://lnkd.in/gEG2Yagd #rarediseases #raredisease #rarediseaseday2024 #rarediseaseresearch #rarediseaseawareness Rare Disease Day National Organization for Rare Disorders
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In this episode, Dr. Bastiaan Bloem talks with Davis Phinney Foundation Executive Director, Polly Dawkins, about a recent article he co-authored, "The Elephant in the Room: Critical Reflections on Mortality Rates Among Individuals with Parkinson’s Disease." Listen to the episode here: https://bit.ly/3S2jy82 --- #parkinsons #parkinsonsawareness #parkinsonsdisease #podcast #mortality #reflection #article
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Medical Communications Consultant | Freelance Medical Writer | Director of KommuniKate Ltd
What wonderful quotes from patients with rare diseases and their carers 💙 💜 💚 Please listen to the podcast and share the post, to lend your voice to those with #RareDiseases, on this #LeapDay, #RareDiseaseDay2024 #LightUpForRARE #ShareYourColours #ShareYourRare #ShowYourStripes
I drive business transformation through eClinical industry expertise🎙️ I also help raise awareness about health conditions by interviewing patients on my podcast, On One Condition
Today is 29th February, a rare day. Through On One Condition Podcast, I have been privileged to talk to many people with a rare disease, and it has made me realize how difficult living with a rare disease can be. My guests have shared stories of the healthcare system knowing little about their condition, stories of tirelessly raising awareness about their chronic illness, stories of fighting to get clinical research interested in looking for a treatment. Those advocates are selfless heroes, and I am grateful for the work they do. Read some of the best quotes about rare disease from the podcast. You can catch-up on those interviews here: https://lnkd.in/ePqRr5xz Hawken Miller Renato Trentin David Edward Rose Aaron Blocker, MSc Seth Rotberg, MNM Kristy T. Alexander Goonesinghe Sabina Kineen #rarediseaseday2024 #rarediseaseawareness #rarediseaseday
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🎧 Happy International Podcast Day! 🎙️ Tune in to our podcast featuring Dr. Steven Gundry, where he shares valuable insights on autoimmune disease treatments and overall health tips. Don't miss out on this informative series! 📻 #InternationalPodcastDay #AutoimmuneHealth
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In our Living With #ChronicIllness podcast series, we aim to amplify the voices of individuals living with chronic conditions and explore the alignment between our research findings and their personal experiences. Our ongoing series covers: NASH, Eosinophilic Asthma, Crohn's Disease, Atopic Dermatitis, and Endometriosis. https://hubs.li/Q01-JSRH0
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Can I Butt In? episode 19 is now available to stream wherever you get your podcasts! In this episode, Sam talks to Helen West, Public Patient Involvement & Engagement Officer at Guts UK. They discuss the charities’ joint project, a diverticular disease priority-setting partnership. Helen and Sam explain what a priority-setting partnership is, what we’ve done so far, what’s going to happen, how you can get involved, and why we’re looking into diverticular disease. You can tune in directly here > https://lnkd.in/erdnV2E2 Please fill out the survey > https://lnkd.in/eUBng2nR Please think about your experience of diverticular disease and related conditions. What questions would you like to ask that future research could answer? This is your opportunity to help shape future research! #CanIButtIn #DiverticularDisease #Diverticula #Diverticulitis #Diverticulosis #ComplicatedDiverticularDisease #BowelResearch
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Our common humanity… That’s something I think any storyteller is trying to understand. It’s the thing that unites all of us, no matter our backgrounds or beliefs. No matter our geography or culture. We are all alive. We may have different experiences, we may disagree on things, but we share that in common. We. Are. Alive. And, with rare disease life, there is so much diversity of experience. My rare disease has treatment. Most do not. Some are diagnosed through newborn screening. Many are not. I can get my prescriptions for my rare disease. Others cannot. But those daily experiences aren’t what unite us. Ultimately, what unites us is the perseverance demanded of us by a rare disease that was thrust upon us. And we take comfort in knowing that if we need support, others are there for us. The quote in the graphic comes from Season 1, Episode 3 of my podcast. The episode is called The Battle for Self-Worth, and it’s part of my rare disease story. My experience of battling with deep isolation and how I find comfort in togetherness (I’m happy to send you a link to the episode, just let me know if you need it). If you choose to live your rare disease life in private, that’s 100 percent your right. It’s your life, and you should live it how you see fit. But I also want to encourage you… If you’re having a rough time living it by yourself, there’s a whole world of people out there eager to lock arms and fight together. And, if there’s ever anything I can do to help, please feel free to reach out. Never Give Up: A Rare Disease Podcast is available on all podcast platforms, and you are welcome to join the journey… Anytime. #raredisease #rarediseasewarrior #rarediseaseawareness #rarediseaseadvocacy #rarediseaseadvocate #rarediseasecommunity #chronicillnessawareness #metabolicdisorder #metabolics #newbornscreening #newbornscreeningsaveslives #advocacymatters
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Our new podcast series Rare Together launches season 2 today, on #rarediseaseday
In case you missed it, Season 2 of our Rare Together podcast is releasing on Thursday, 29th February, which is also #RareDiseaseDay! 🌍 Join us every Thursday for engaging discussions and insightful conversations. This season, we’re delving into various topics such as post-traumatic growth, diverse perspectives on rare diseases, the complexities associated with a loved one having a life-limiting rare disease, and more. If you want to catch up on Season 1, Rare Together is available on all these streaming platforms: https://lnkd.in/e8TFYBme
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"LIVING WITH COELIAC DISEASE" New Podcast Episode 🎧 Having both been diagnosed with coeliac disease in the past 12 months, Maddie and Alisa discuss how it's changed their lives. They share all they've learnt about the disease including: ▫️Their story of diagnosis and advice on how to get tested. ▫️The shock of learning you are coeliac (only 36% of those with CD will be diagnosed). ▫️How coeliac disease affects 1/100 people. ▫️Changing staple foods and finding good alternatives. ▫️Understanding the long term effects of the disease. ▫️The current lack of post diagnosis support medically. ▫️Being forced to change to a healthier, more natural diet. It's a really insightful listen, you can listen by searching "GoPerform Podcast wherever you listen to your podcasts. Enjoy! https://lnkd.in/extxQ2fQ #coeliacdisease #goperformpodcast #goperform
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Dad, Caregiver and Founder
4moThanks mix for your commitment and support of those impacted by Rare Disease. #themixsix