Know Rare

???NOW STREAMING: Rare Insights A new podcast series focusing on the future of potential rare disease treatments. ?? This series promises to delve deep into the cutting-edge research and innovative therapies that are shaping the landscape of rare diseases. Industry and organizational leaders share the latest advancements, providing expert perspectives and valuable knowledge. These thought leaders will discuss breakthroughs and the impact these innovations may have on patients’ lives and the healthcare industry as a whole. Hosted by Taren Grom, co-founder and former media executive of PharmaVoice, this podcast brings unmatched expertise and insight to the conversation. Grom’s experience and passion for the subject will guide you through each episode, ensuring a rich and informative experience. ?LISTEN NOW? wherever you stream your podcasts! For more information visit: https://lnkd.in/ggxKiXws - #medicalresearch #raredisease #rarediseaseawareness #clinicaltrials #clinicaltrial #healthcareindustry #clinicalresearch #KnowRare #RareInsightsPodcast

Every type of study is valuable. Whether it’s gathering clues, monitoring progress, or testing breakthroughs, each piece helps build a bigger, brighter picture for the future of rare disease healthcare. ??? ? If you’re living with a rare disease, getting involved in clinical research can feel like stepping into the unknown. But know this—you have options, and each type of study is a step toward more answers and more hope.? ? Whether it’s understanding your disease better, testing a potential treatment, or helping improve the quality of life for future patients, your participation matters. Each study is another piece of the puzzle, building toward breakthroughs that could change lives—including yours.? ? Are you interested in research? ??? ? Which study type feels right for you? ??? ? Let us know in comments or DM us if you want support connecting to research.? ? -? ? #clinicalresearch #clinicalstudy #clinicalstudies #medicalresearch #medicalnews #raredisease #rarediseaseresearch #rarediseases #KnowRare

If you or a loved one is living with a rare disease, the idea of participating in a clinical trial can feel overwhelming—and that’s totally understandable. ? ? ?? Clinical trials are a big step, but they’re also a path to discovering new treatments and hope for a better future.? ? It’s important to remember that trials are designed with patient safety and care at the forefront. Every phase is a part of the journey to ensure the treatment is as safe and effective as possible. While the road may seem long, it’s leading toward something potentially life-changing—not just for you, but for so many others facing the same challenges.? ? No matter where you are in your decision-making process, we’re here to support you. Take your time, ask questions, and know that you’re making an incredible contribution to the future of medicine.? ? -? ? #clinicaltrials #clinicaltrial #medicalresearch #medicaladvancements #raredisease #rarediseaseresearch #rarediseaseawareness #KnowRare

When living with a rare disease, it can be easy to dream about the lives we could have led if we were fully healthy or if we had made different decisions along the way. If you struggle with this, here are several suggestions by Chris from Hello, Adversity, inspired by Matt Haig‘s “The Midnight Library”. What do you do to appreciate your current life and handle thoughts of regret? ?? - #raredisease #rarediseaseawareness #rarediseasewarrior #spoonies #spooniesupport #mentalhealthmoment #mentalhealthmatters #mentalhealthawareness #KnowRare

You should be believed no matter what. But sometimes having the data helps. ? ? With the ?? Healthstory AI App, you can track your moods and symptoms so that you have a record of exactly how you've been feeling to show your doctor or medical professional. ? ? Data is power.? ? ?? Download the Healthstory AI App today: https://lnkd.in/gk-EWdJ9? ? -? ? #HealthstoryAIApp #HealthStoryAI #raredisease #rarediseaseawareness #rarediseasewarriors #chronicillnessawareness #spoonie #spoonies #spooniestrong #spooniesupport #KnowRare?

Perspective-taking is a practice.??? ? Our minds are conditioned to see the negative and be critical of ourselves and our situations.? ? With practice, we can empower our own narrative.? ? Follow Know Rare for more perspectives.? ? -? ? #mentalhealthmoment #mentalhealthawareness #raredisease #rarediseaseawareness #spoonies #spooniesupport #spoonielife #KnowRare

How do you feel about knowing your genotype? ? ? Does knowledge feel like power? ??? ? Understanding sickle cell genotypes—AA, AS, SS—can make all the difference for your health. ? ? Let’s empower ourselves with information and advocate for awareness! ???? ? -? ? ? #SickleCellAwareness #KnowYourGenotype #SickleCellAwareness #GenotypeEducation #KnowledgeIsPower #sicklecelldisease #raredisease #rarediseaseawareness #rarediseaseadvocacy #KnowRare

Participate in studies where specialists are interested in studying everyday life of people with Mutlifocal Motor Neuropathy (MMN)? ? ?? Learn more by sending us a DM or by visiting https://lnkd.in/gwiXMXdj? ? -? ? #MMM #MultifocalMotorNeuropathy #raredisease #rarediseaseawareness #clinicalstudies #clinicalstudy #medicalresearch #KnowRare

"The new school year can bring about all sorts of feelings for parents and students alike. While it can be a hopeful time, it can also be a time of unmet milestones or expectations. When a child or young adult fails, it can feel like the end of the world. But failure is a part of this life, with or without rare disease in the mix.? ? If they didn’t get into their dream college or they did poorly on a test, it can crush their confidence.? ? What’s missing is perspective. Far from it being the end of the world, failure is often a catalyst for success.? ? To be clear, failures and setbacks are never fun. Just because adults know that there are other colleges out there and that one bad test doesn’t dictate a child’s academic future, it doesn’t mean we need to belittle their disappointment.? ? We have the benefit of life experience; they don’t.? ? What can we do? We can help kids see that failure happens to everyone. It’s not permanent, and it’s nothing to fear."? ? -- ? ? #raredisease #rarediseaseawareness #rarediseasewarrior #spoonies #spooniesupport #mentalhealthmoment #mentalhealthmatters #mentalhealthawareness #KnowRare? ?

The latest episode of Rare Insights is LIVE! ??? Tune in as host Taren Grom sits down with Dr. Joanne Donovan, Chief Medical Officer at Edgewise Therapeutics, to explore cutting-edge treatments for rare neuromuscular and cardiac diseases like Becker and Duchenne muscular dystrophy. In Episode 4: “Conquering the Science of Muscle Disease with Edgewise Therapeutics”, we cover: ? Edgewise’s innovative “muscle as an organ” approach. ? The unique mechanism behind EDG-5506, targeting muscular dystrophy. ? Challenges and breakthroughs in drug development for Duchenne and Becker patients. ? How Edgewise incorporates the patient voice in every step of development. What’s on the horizon for muscle disease research. ?? Search ‘Rare Insights’ in your favorite podcast player and stream episode 4 now! Learn more: https://lnkd.in/ggxKiXws - #RareInsightsPodcast #raredisease #rarediseases #rarediseaseawareness #beckermusculardystrophy #musculardystrophy #becker #Duchennemusculardystrophy #EdgewiseTherapeutics #KnowRare Edgewise Therapeutics