Axios International’s Post

Rare and orphan disease patients often need a little extra support. That's why we use our over 30 years of experience to help patients along their journey. Our team is focused on answering questions as they come up. We also want to make sure treatment plans are easy to follow and tailored to the patient's needs. Whether you're a patient yourself, a patient's loved one, or a provider looking to help patients stay on their treatment plans, we can help on every step of the journey. Find out more about what we do here: https://lnkd.in/gS9sFs87 #SpecialtyPharmacy #PatientCenteredCare #RareDisease

Join our FREE webinar to hear more about the barriers preventing early diagnosis and how you can have lifesaving conversations about risk with the men in your life. You'll be able to hear directly from our Specialist Nurses and men with lived experience of the disease. 🗓️ Wednesday 26 June ⏰ 7-8pm ➡️ Book your spot: bit.ly/3KILKst #ProstateCancer l #Webinar

Medical gaslighting is a term used to describe situations where healthcare providers dismiss or downplay a patient’s symptoms, leading the patient to question their own experiences and feelings. Discussing medical gaslighting is crucial within the rare disease community because it can lead to delays in diagnosis, inadequate treatment, and a profound sense of mistrust in the healthcare system. People living with rare diseases frequently endure long journeys in search of answers, and when their experiences are invalidated, it can compound the challenges they already face. By understanding the signs of gaslighting and learning effective strategies for navigating the healthcare system, individuals can better advocate for themselves and ensure they receive the proper care that they deserve. Learn more at https://lnkd.in/ec29HSKZ #rare360 #rareadvocacy #livingrare #rarediseases #gaslighting #gaslightingawareness #medicalPTSD For rare disease news, visit www.rare360.life

Care is more than medication delivery, and rare diseases deserve hyper-personalized care. In one case, Accredo worked intimately with a patient diagnosed with non-24-hour sleep-wake disorder to connect the right at home resources for the patient to not only survive but thrive with this rare condition. Explore how Accredo’s patient-centric approach helps patients improve their quality of life. https://bit.ly/42Zh7Y1 #SpecialtyPharmacy #RareDisease #RareDiseaseTRC

September 14 is #WorldAtopicEczemaDay. Let's spread awareness on this crucial day! Let’s speak up about the burden that #AtopicDermatitis has on patients and caregivers, and emphasize the need for comprehensive care and treatment that addresses the multidimensional nature of the disease. Today, we have the opportunity to change the lives of our patients thanks to recent therapeutic advancements, and we must continue to advocate to ensure that all patients have access to these life-changing treatments. #WorldAtopicEczemaDay #AtopicDermatitis #ADERMAP

Learn how to be an effective storyteller. At the CDC we know that Americans need policy reform at the state and federal level to make the lives of chronic disease patients better. The best way to create this change is sharing the real, raw stories of chronic patients. To help you share your story, we have outlined best practices and a template to make sharing your story with legislators as easy as possible. Learn more at: https://lnkd.in/gYrp9Y9S

For #scleroderma patients, the uncertainty can be overwhelming, especially when neither patient nor doctor are familiar with the disease... 🔐 Raising awareness is key, and enables patients and healthcare providers to recognise symptoms early - leading to better #treatment and a higher quality of life. ❓So, how do we spread the word? Educate yourself and others about scleroderma, share accurate information and participate in discussions in your community. Let's bridge the knowledge gap and create a more informed and compassionate environment for those affected by #ChronicDisease. ✨ #SclerodermaAwareness #ChronicIllness #PatientSupport

#MSAwarenessMonth is a time to raise awareness of #MultipleSclerosis and the challenges faced by millions living with the disease. Join our CME webinar and empower yourself to better serve patients living with Multiple Sclerosis! 🔹 Explore the latest therapies, quality of life, & safety data. 🔹 Understand burden of multiple sclerosis. 🔹 Optimize patient care by applying best practices for diagnosis, disease course, and functionality. Learn more: https://ow.ly/aW7b50QK77m Continue watching animation here: https://ow.ly/85Ol50QK77k #MultipleSclerosisAwareness #MedicalUpdates #QualityOfLife #MedLearningGroup

At SMS Clinical Research, we're conducting a study to explore new treatment options for COVID-19. If you or a loved one, aged 12-64 and otherwise healthy, is diagnosed with COVID-19, you may qualify to participate and earn $900+. Your involvement can help advance our understanding and treatment of this contagious disease. Enroll now and contribute to the fight against COVID-19. #COVID19 #FightCOVID #HealthcareInnovation #BeAPartOfTheSolution #Mesquite #SMSClinicalResearch #HealthyLiving #ClinicalTrial #PatientCare #MedicalResearch #ClinicalTrials #Covid19 #HealthScience #ClinicalStudy #ResearchTrial #PatientCare #HealthCare #Treatment #Eczema

After a diagnosis, a person with a rare disease—along with  their caregivers—can be  left scrambling for answers, searching for treatment, and picking up the pieces of their pre-diagnosis life.     We reassemble and mend, reprioritize and move forward with a diagnosis we did not choose. In truth, we have no other choice but to continue with courage and hope.     The stresses and symptoms are chronic. We grapple with the social-emotional impacts of the diagnosis on everyone involved.      We lay awake, wondering why. It is here, amid the realities of rare disease, symptom burden, and ongoing uncertainty, where palliative care services can provide extraordinary support.     🔗 'The Power of Palliative Care: What one Rare Mom wants you to know about palliative care programs and how they’ve impacted her family.' now on The Know Rare Blog: https://lnkd.in/g4VGzvnW    -    #palliativecare #caregiversupport #caregiverlife #raredisease #rarediseases #chronicillness #rarediseaseawareness #rarediseaseadvocacy #spooniesupport #spooniestrong #KnowRare