Atlas Health’s Post

Rare Disease Day is of paramount importance as it sheds a spotlight on the often-overlooked challenges faced by individuals with rare conditions. It serves as a collective call for awareness, advocacy, and unity, emphasizing that every life, no matter how uncommon the journey, deserves understanding, support, and dedicated research. We are not naive to the numerous challenges rare and medically complex patients face, and we want to start making some changes. We know how difficult it can be navigating healthcare when you don’t fit into any of the existing boxes. Join us today as we begin to discuss the specific obstacles, we experience in trying to access the care that we need and prepare for a conversation about how we can use our voices and stories to create change. Additionally, we have heard our west coast members and will be offering a second session at 6:00 PM PST as well. Attendees can choose to register for one or both. The conversation will be centered around the same topic, just offered twice to accommodate different time zones. Hope to see you there! Register at bit.ly/complexpatients Questions? Email info@oley.org

Today is Feb 29th. The rarest day in the calendar and #RareDiseaseDay Over 300 million people suffer from a rare condition worldwide, with an alarming 50% (150Million) being children. Despite remarkable technological and medical progress, the grim reality persists: more than 95% of rare diseases have no FDA-approved treatments. Shockingly, 30% of children affected with a rare condition (45Million!!!) won't live to see their 5th birthday. Rare diseases have no preference for gender, ethnicity, economic status... it can touch ALL of us with no heads up, imposing huge personal and economic burdens for families and societies. Change is needed for the benefit of all. Here's a list of things we can collectively do to turn this dismal page for rare diseases: 1. #raiseawareness among healthcare professionals, policymakers, and the general public about rare diseases to facilitate early diagnosis and access to a patient-centered approach to care 2. #researchfunding to understand disease mechanisms and develop treatments 3. #collaboration among researchers, clinicians, patients, and advocacy groups to share knowledge, resources, and best practices 4. #regulatoryincentives to encourage pharmaceutical companies to research and develop treatments for rare diseases 4. Access to #orphandrugs through healthcare coverage, reimbursement policies, and patient assistance programs 5. Expand access to #genetictesting to facilitate early diagnosis and personalized treatment approaches 6. #openaccess #datasharing programs to collect and analyze data on rare diseases 7. #education and #training for healthcare professionals on the recognition, diagnosis, and management of rare diseases Will you add your voice to ours at v-ATPase Alliance this Rare Disease Day to push this agenda forward?

Cardiac Rehab: Improving saved Lives and restoring hope through passionate education and scientific conditioning.

Rare Across America is a program of Rare Disease Legislative Advocates of the EveryLife Foundation for Rare Diseases that organizes virtual appointments with rare disease advocates Senators and in person meetings with their representatives in their district offices during Congress' August recess. Its purpose is to educate lawmakers on the needs of the rare disease community. Its aim is to help rare disease advocates build relationships with their lawmakers and help raise awareness of rare diseases on a national level. #rareacrossamerica2024 #RDLA #everylifefoundation #NMOSD #nmosdwarrior #raredisease #rarediseasewarrior #rarediseaseadvocacy #gjcfpac #GJCF Rare Across America Begins Today! Rare Across America meetings officially begin today and run through August 16th. In order to ensure you're prepared, please follow the four steps below. • You should have received an email from Advocacy Associates with a link to your meeting schedule on Monday, July 22. If you haven't already, please click the link to access the dates and times of your scheduled meetings. If you need your meeting schedule resent, please email klaws@everylifefoundation.org. Need assistance with logging into or navigating the Advocacy Associates platform? Click here • If you're no longer able to participate in Rare Across America from August 5-16 or unavailable for any of your scheduled meetings, please email klaws@everylifefoundation.org. • Visit the Rare Across America website to access one-pagers on each of the asks, recordings of the training webinars, and other materials to help you prepare. • If you are in meetings with an assigned team coordinator and haven't already responded to your team coordinator's outreach, please do so! They are currently working to build the agenda for each meeting. Not sure if your meeting has a team coordinator? Reach out to klaws@everylifefoundation.org.

📣We want to hear from you! Are you living with heart disease? Help The Mended Hearts, Inc. improve education, support, and advocacy for the #HeartCommunity by taking our quick 16-question survey. This survey takes under 5 minutes to complete and makes a direct impact on #HeartPatients! Click the link to take the survey⬇️ https://lnkd.in/exjy_q2m

📣We want to hear from you! Are you living with heart disease? Help The Mended Hearts, Inc. improve education, support, and advocacy for the #HeartCommunity by taking our quick 16-question survey. This survey takes under 5 minutes to complete and makes a direct impact on #HeartPatients! Click the link below to take the survey🔗 https://lnkd.in/eaRrtAb4

July 10th is #ChronicDiseaseDay. According to the CDC, approximately 120 million Americans have at least one major chronic disease. Additionally, according to the World Health Organization, only 50% of patients who suffer from chronic diseases adhere to treatment recommendations. This issue is very important to our team given how many lives it affects. If you would like to learn more about what you can do to help raise awareness and affect change, visit the page below. #ChronicDiseaseMonth #medicationadherence https://okt.to/rPmNLX

July 10th is #ChronicDiseaseDay. According to the CDC, approximately 120 million Americans have at least one major chronic disease. Additionally, according to the World Health Organization, only 50% of patients who suffer from chronic diseases adhere to treatment recommendations. This issue is very important to our team given how many lives it affects. If you would like to learn more about what you can do to help raise awareness and affect change, visit the page below. #ChronicDiseaseMonth #medicationadherence https://okt.to/seWtcv

Today is #ChronicDiseaseDay. According to the CDC, approximately 120 million Americans have at least one major chronic disease. Additionally, according to the World Health Organization, only 50% of patients who suffer from chronic diseases adhere to treatment recommendations. This issue is very important to our team given how many lives it affects. If you would like to learn more about what you can do to help raise awareness and affect change, visit the page below. #ChronicDiseaseMonth #medicationadherence https://okt.to/ydqMmu

July 10th is #ChronicDiseaseDay. According to the CDC, approximately 120 million Americans have at least one major chronic disease. Additionally, according to the World Health Organization, only 50% of patients who suffer from chronic diseases adhere to treatment recommendations. This issue is very important to our team given how many lives it affects. If you would like to learn more about what you can do to help raise awareness and affect change, visit the page below. #ChronicDiseaseMonth #medicationadherence https://okt.to/qpdSw5