InStride Health’s Post

A diagnosis of Myelodysplastic Syndromes can raise a lot of questions for patients and caregivers. You and MDS is an animated guide designed to answer questions and provide vital information. This activity has been developed to provide highly visual formats of learning for patients to improve your understanding, make informed decisions, and partner with your healthcare professionals for optimal outcomes. Learn more at: https://bit.ly/46VnGw0 #MDS #MDSFoundation #BloodCancer #BloodCancerAwareness #CancerAwareness

[AES Recap] Angelman syndrome and SYNGAP1 exhibit overlapping symptoms, yet the frequency of each symptom sets the conditions apart. Our third poster aimed to delineate these symptoms to improve disorder comprehension and understanding of the impacts on patient care as viewed by providers and caregivers. Leveraging healthcare claims data and caregiver-reported surveys, we found that caregiver-reported symptom frequencies were significantly higher than those found in claims data, likely illustrating a more complete picture of the constellation of symptoms than claims data, which tends to see only a handful of the most active symptoms. Emphasizing symptom reporting is pivotal for earlier diagnosis and better support for patients and caregivers along their diagnostic journey. Thank you to our partners at the Children's Hospital of Philadelphia and the University of California, San Francisco for this collaboration! #AES #AES2023 #syngap1 #angelmansyndrome #epilepsy #childhoodseizsuredisorders

“Unraveling the contrasting perspectives of healthcare providers and caregivers highlights the intricacies of these conditions [Angelman syndrome & SYNGAP1]. Physicians prioritize clinical terms, while caregivers emphasize life-altering symptoms...." There's a clear divide between physician and caregiver-reported symptom frequencies for those living with #AS & #SYNGAP1. Read our new blog post to learn more about the importance of symptom reporting in early diagnosis of rare conditions: https://bit.ly/488gVaa #angelmansyndrome #syngap1 #childhoodseizuredisorders #raredisease

September is #NICUAwareness Month. Read our Expert Insight, “Supporting NICU clinicians with expert neonatal content,” to learn how #ClinicalDecisionSupport tools can alleviate challenges and improve outcomes for the smallest patients. https://ow.ly/12uK50PO8mT

“Unraveling the contrasting perspectives of healthcare providers and caregivers highlights the intricacies of these conditions [Angelman syndrome & SYNGAP1]. Physicians prioritize clinical terms, while caregivers emphasize life-altering symptoms. This divide underscores the need for comprehensive symptom reporting, which will be a crucial step towards early suspicion and diagnosis in rare conditions." There's a clear divide between physician and caregiver-reported symptom frequencies for those living with #AS & #SYNGAP1. Read our blog post to learn more about the importance of symptom reporting in early diagnosis of rare conditions: https://hubs.li/Q02BW_xN0 #angelmansyndrome #syngap1 #childhoodseizuredisorders #raredisease

We have been busy at https://lnkd.in/dQG_WPVi visit our new parent resource page for LGMD caregivers. Don't forget to subscribe to receive our free quarterly newsletter full of advice, rare patient stories, scientific updates and more. #genetherapy #LGMD #parentadvocate #foregenomics #publicspeaker #lunchandlearn #dearmamathebook #raredisease #navigatingrare #genetictesting #keynotespeaker

JOIN US TONIGHT! These events are hosted by local experts on relevant topics for Sarcoma patients and caregivers. Come learn and join the conversation. Patient Education Night https://lnkd.in/gxyd8yaq #nwsarcoma, #dragonslayersunite, #sarcoma

Remember, each person with Alzheimer's is unique. Patience is essential for adapting, empathizing, and being present in their journey, enhancing their quality of life and your caregiving experience. Our multidisciplinary team is experienced at providing expert comprehensive care for Alzheimer's patients. Book an appointment through the SGH app or call 920007997. #SaudiGermanHealth #SGHealth #SGHKSA #SGHGlobal #KSA #CaringLikeFamily #AlzheimersCare #PatientCare #AlzheimersCareTips

This week! Join us Wednesday for a discussion led by Helenlyn Popescu, CPO, of three complex case studies related to spinal injuries in the pediatric population. During this session we will discuss barriers, facilitators, prosthetic and orthotic interventions, and difficult conversations to have with patients, families, and care teams. https://buff.ly/3UrSEZ5

Navigating the complexities of scoliosis management, I delve into the efficacy of both surgical and non-surgical approaches. Emphasizing the importance of a robust support system, I highlight how patients can build resilience and character through their journey. This discussion underscores the significance of patient empowerment in the face of chronic illnesses. #HealthcareManagement #ScoliosisCare #PatientSupport #MentalResilience #ChronicCare #HealthLeadership #EmpowermentInHealth #PatientAdvocacy #MedicalCommunity #ProfessionalGrowth