🎙️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
Know Rare
Health and Human Services
New York, NY 853 followers
We are a rare disease community made by people just like you.
About us
At Know Rare, we aim to connect people living with rare diseases to information about their conditions as well as to specialists, clinical studies, advocacy organizations, and more. Fueled by a proprietary technology platform created by a team of people who have been living with the realities of a rare disease, our goal is empowerment through understanding, tools and resources to manage everyday life. Know Rare improves access to the latest rare disease research through information from experts, providers, and sponsors to help to demystify the process for people considering participating in a clinical trial.
- Website
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http://knowrare.com/sponsors
External link for Know Rare
- Industry
- Health and Human Services
- Company size
- 11-50 employees
- Headquarters
- New York, NY
- Type
- Privately Held
- Founded
- 2020
- Specialties
- clinical trials, rare disease, rare cancer, and clinical studies
Locations
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Primary
1460 Broadway
New York, NY 10036, US
Employees at Know Rare
Updates
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Help researchers learn more about your life with Congenital Myasthenic Syndromes (CMS) 💙 🔗 Send us a DM or visit https://lnkd.in/eTF8zvam - #CongenitalMyasthenicSyndromes #CMS #eyedisease #raredisease #rarediseases #rarediseaseawareness #medicalresearch #clinicaltrials #clinicaltrial #KnowRare
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Check out Hello, Adversity's newest post this week "Follow Your Heart", sponsored by Know Rare 💙 https://lnkd.in/gM4_URZ9 #HelloAdversity #raredisease #rarediseaseawareness #mentalhealth #mentalhealthawareness #KnowRare
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Are you interested in raising awareness and learning more about rare neuroimmune disorders? Join SRNA at the 2024 RNDS! 📅 Date: October 18 – 20, 2024 📍 Location: This is a Hybrid conference being hosted online and in-person at Dallas Fort Worth International Airport Hear from leading experts in MOG antibody disease (MOGAD), acute disseminated encephalomyelitis (ADEM), acute flaccid myelitis (AFM), neuromyelitis optica spectrum disorder (NMOSD), optic neuritis (ON), and transverse myelitis (TM), as well as their families, care partners, and medical professionals. 🔗 Register now: wearesrna.org/2024-rnds - #2024RNDS #MOGAD #ADEM #AFM #NMOSD #OpticNeuritis #TrasversMyelitis #raredisease #rarediseaseawareness #SRNA #KnowRare
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Curious about the latest in Multifocal Motor Neuropathy (MMN)? Observational studies offer valuable insights. Learn more about research participation with minimal interference in your life. 🔗 Visit https://lnkd.in/gwiXMXdj for more information. - #MultifocalMotorNeuropathy #raredisease #rarediseaseresearch #medicalresearch #clinicalstudies #clinicalresearch #rarediseases #rarediseaseawareness #KnowRare
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Dictionaries have one definition, and rare disease patients have many others. How do you define a beginning? 💭 What is a beginning you remember in your rare disease journey? 💭 Which definition speaks to you at the moment? 💭 Let us know in the comments!👇 - #spooniesupport #invisibledisability #butyoudontlooksick #spoonies #invisibleillnessawareness #raredisease #rarediseases #rarediseaseawareness #rarediseasewarrior #rarediseaseadvocacy #KnowRare
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Meet Laura Will, MSN, Know Rare Community Manager 💙💛 "In 2014 I graduated with a masters in nursing and entered the workforce as a nurse practitioner. In 2018, I became a mom to a healthy baby girl. Then, in 2020, I became a rare mom, a medical mom. When I gave birth to my little boy Alden, who lives with a rare condition, every storyline of my life swerved - both professional and personal. Traditional parenting mindsets are based on the assumption that we will launch our children into a future beyond us, where they will be healthy and independent. I mourn those assumptions, and hold my rare child close. I am like you, forged by the unexpected journey of rare. We are fierce; we find strength; and we are often sleepless and adrift in uncertainty. I joined the Know Rare team in late 2020, and have had the pleasure of using both my medical training as a nurse practitioner and my lived experience as a rare mom. Working with the team at KnowRare has offered meaningful direction, in the hours I am not managing my rare child’s needs and all the neuro-typical needs of his siblings. The deeper I get into the world or rare, the more I appreciate the value of sharing our experiences and knowledge. Life enhancing insights sometimes come from the doctors and the nurses, sometimes they come from the newest research, and mostly they come from our peers - from you, and me - those of us who live it every single day. And so, I’m stepping into a new role at Know Rare: Chief Community Manager, to focus my energy towards cultivating that hard-won rare wisdom, those cutting-edge rare insights, and those must-read rare stories — and sharing it all here. " - #raredisease #rarediseaseawareness #rarediseaseadvocacy #spoonies #spooniestrong #KnowRare
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No one knows more about CMS than people who live with it. Share your experiences with the leading researchers in CMS to help them develop potential new ways to treat it. 🔗 Learn more by sending us a DM or visiting https://lnkd.in/eTF8zvam - #CongenitalMyasthenicSyndromes #CMS #eyedisease #raredisease #rarediseases #rarediseaseawareness #medicalresearch #clinicaltrials #clinicaltrial #KnowRare
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Living with a rare disease is difficult. Find information and helpful resources about your rare disease on The Know Rare Blog 💛💙 www.knowrare.com - #raredisease #rarediseases #rarediseaseawareness #rarediseaseresources #chronicillness #chronicillnessawareness #invisibleillness #spooniesupport #spooniestrong #KnowRare
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September is National Sickle Cell Awareness Month 🔬 Sickle cell disease is the most common inherited blood disorder in the U.S., affecting around 100,000 Americans. Swipe to take a moment to Get to Know Sickle Cell. - #raisingawareness #sicklecellstrong #sicklecellawareness #sicklecellanemia #sicklecell #raredisease #rarediseaseawareness #rarediseaseadvocacy #KnowRare