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

When a rare disease enters a relationship, it can claim time, money, and comfort. Howard Woolley was married to Gail for 34 years before her passing.     "No matter what life brought to her via sickle cell disease she was always the same person I fell in love with and married."    Howard is a Sickle Cell Disease philanthropist and advocate. What did he learn from his time as a caregiver and a husband?     To travel, enjoy what you can; find joy in the daily, small things; and recharge away from caregiving.     Are you a partner to someone who has a rare disease? 💭    Do these speak to you? 💭    What would you add - let us know in the comments! 👇    -    #sicklecell #sicklecelldisease #SCD #raredisease #rarediseaseawareness #chronicillness #chronicillnessawareness #spoonie #spooniestrong #spooniesupport #spoonies #KnowRare

Six key highlights are detailed in the Applied Clinical Trials Magazine article linked below, from our collaborative survey to patients. With thanks to our partners at Know Rare Nina Wachsman, Liz Kay and stuffthatworks Yael Elish, Heather Dula and intern Cole Dillaplain for his expert data analysis! 🙏🏻 #patientinsights #patientengagement #clinicalresearch

It’s okay to crumble. 💙 It’s okay to have bad days. It’s perfectly fine to get frustrated, angry, and burst into tears from time to time. To keep going is to accept that there will be rough patches on occasion. It’s a long-term decision to persevere, more than a minute-by-minute commitment to fighting through the pain no matter what. One of the best ways to keep going is to clarify your purpose. - #mentalhealthmoment #mentalhealthawareness #selfcaresunday #mentalhealthmatters #raredisease #rarediseaseawareness #chronicillness #chronicillnessawareness #spoonie #spooniestrong #spooniesupport #spoonies #KnowRare

Understanding our pain is a deeply personal journey, and the answers lie within each of us. In our latest exploration, we dive into crucial questions that can help you gain insights and regain control.    Have you taken the time to reflect on your experiences? Consider how your understanding of pain has changed since the beginning. Have you identified patterns that affect your pain?    These questions aren’t just prompts; they’re pathways to discovery.     What insights have you gained about your pain management? 💭    Share your thoughts in the comments and let’s support each other on this journey.👇    -    #MMN #multifocalmotorneuropathy #painmanagement #painwarrior #spooniewarrior #chronicpainawareness #spooniestrong #butyoudontlooksick #spooniesupport #spoonielife #chronicillnessawareness #KnowRare 

Living with chronic pain can feel isolating, but it’s a journey that many share.💙     Recent research published in the Journal of Pain Research delved into the realities of this experience, revealing key insights that can empower those navigating pain.     Which ones do you relate to? 💭    What’s your personal antidote to pain? 💭    Let us know in the comments below.    -    #MMN #multifocalmotorneuropathy #painmanagement #painwarrior #spooniewarrior #chronicpainawareness #spooniestrong #butyoudontlooksick #spooniesupport #spoonielife #chronicillnessawareness #KnowRare

Did you know? 💭     The sickle shape of red blood cells in sickle cell disease provides a unique genetic advantage against malaria!    Individuals with the sickle cell trait (one copy of the gene) have a lower risk of severe malaria because the malaria parasite struggles to survive and reproduce in sickle-shaped cells. This evolutionary trait has developed in regions where malaria is prevalent, showcasing a fascinating example of natural selection.    While sickle cell disease poses serious health challenges, this genetic adaptation highlights the complex relationship between genetics and disease resistance. Understanding these connections helps us appreciate the broader implications of sickle cell and its role in human health.    Let’s continue to raise awareness and support research for those affected by sickle cell disease! 🔬    #sicklecellfacts #sicklecellawareness #sicklecellawareness #sicklecelldisease #raredisease #rarediseaseawareness #rarediseaseadvocacy #spoonies #spooniesupport #spoonie #KnowRare

Instead of a love letter, perhaps it would be valuable to sit down and write a break up letter to that doctor (or doctors) who just did not hold space for you, your symptoms, or your uncertainty.     Anger can fuel you to become a change maker. 💙    -    #raredisease #rarediseaseawareness #rarediseasewarrior #spoonies #spooniesupport #mentalhealthmoment #mentalhealthmatters #mentalhealthawareness #KnowRare

Pain is a complex journey that goes beyond just physical symptoms.     Researchers have identified five personas that many of us can relate to during our experiences with chronic pain. From the determined Diagnosis Detectives to the resilient Supportive Survivors, each persona reflects unique challenges and strengths.    Which one resonates with you? 💭    Share your story in the comments and let’s support each other on this journey.👇    -    #MMN #multifocalmotorneuropathy #painmanagement #painwarrior #spooniewarrior #chronicpainawareness #spooniestrong #butyoudontlooksick #spooniesupport #spoonielife #chronicillnessawareness #KnowRare

The rare experience changes us.💙    How we respond to our challenges becomes its own reward.     This doesn’t mean we need to show unhealthy levels of grit, just that we should be open to how our character can evolve in response to adversity.    I recently watched a video by Duke women’s basketball coach (@dukewbb) Kara Lawson (@karalawson), who said this to her team: “We wait for stuff to get easier. It will never get easier. What happens is you handle hard better.”    This is great advice in general, but especially when we can’t change our circumstances. This doesn’t mean that if you struggle to handle your challenges well, you’ve failed in any way, nor does it mean mercilessly berating yourself for your shortcomings.     This isn’t meant to be toxic.     Rather, it leaves open the possibility that hard times can lead to personal growth.    -    #raredisease #rarediseaseawareness #chronicillness #chronicillnessawareness #spoonie #spooniestrong #spooniesupport #spoonies #KnowRare