Carla Scaramella, founder of Hirschsprung Argentina, and Luciana Pareto, founder of AMAR, describe how their two patient advocacy groups have come together to advocate for families affected by Hirschsprung’s disease and anorectal malformations. https://lnkd.in/evZxJatm #RareDisease #Hirschsprungs #AnorectalMalformations #ImperforateAnus #HirschsprungArgentina #AMAR #HospitalItalianoBuenosAires
RARE Revolution Magazine’s Post
More Relevant Posts
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Want to get more involved in advocacy? On this #ToolboxTuesday, take a look at some upcoming advocacy events from RDLA. Learn more: https://ow.ly/tm3s50QUFIt #BattenAdvocatesForACure #RareDisease #BattenDisease EveryLife Foundation for Rare Diseases
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We study over 180 #RareDiseases at more than 380 active clinical sites—both in the United States and internationally—and partner with over 160 patient advocacy groups. Learn more about the diseases we study: https://lnkd.in/exr6haQQ #RareDiseaseDay #RDDNIH #RDCRN20
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Today is #RareDiseaseDay 💜 Rare Disease Day is observed every year on February 28th (or 29th in leap years)—the rarest day of the year! This day raises awareness for the thousands of rare diseases affecting millions worldwide. We have dedicated Advocates for LGS at the capital, amplifying the voices of those impacted by #LennoxGastautSyndrome and striving for better treatments and support. For more information about advocacy efforts, visit: https://ow.ly/C5bi50QIqk1 #Epilepsy #Advocacy #RareDisease #ShowYourStripes
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Don't miss the third webinar in our series on Antimicrobial Resistance (AMR) and patient advocacy. 📆 12th September 2024, 3-4pm CEST 👉 Register here: https://bit.ly/3yusqwr Join us for a discussion on how to empower and mobilise patient communities to advance the #AntimicrobialResistance agenda at a higher level. #AMR #PatientAdvocacy #PatientVoice
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July 22nd is #WorldBrainDay! 🌎 Today is focused on increasing awareness and promoting advocacy for #BrainHealth 🧠 an increasingly urgent issue in the modern age, referring to many different diseases and prevention methods, ranging from #mentalhealth to #neurologicalhealth.
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Inclusion drives effective policy making 🤝 ⏩ In anticipation of #ESOTaction Day tomorrow, we’re shining a spotlight on the invaluable insights of patients and patient advocacy groups in shaping transplant initiatives and legislation 💭 💡 Learn more in our manifesto 👉 https://lnkd.in/d3PiV3Xg 📸 Raj Thuraisingham
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Navigating Educational and Advocacy Efforts Amidst Arthritis Challenges Learn the intricate ways arthritis affects educational and advocacy endeavors and how individuals navigate these challenges to promote awareness and support. https://lnkd.in/gNxixhzF #arthritis #arthritic #arthriticpain #arthriticpainrelief #arthritiscare #arthritisawareness #arthritisremission
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It's PKD Awareness Week! Polycystic Kidney Disease affects millions, but with awareness, we can drive change. Learn the signs, support research, and advocate for those living with PKD. Together, we can make a difference! #PKDAwareness #PolycysticKidneyDisease #KidneyHealth #Support #Research #Advocacy
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Addressing kidney care requires comprehensive policy solutions, including better access to medications, lifestyle guidance, and the adoption of CKD guidelines. Find out more in our 2024 Advocacy Paper : 👉🏻 https://lnkd.in/djVE2yE8 #WorldKidneyDay #KidneyHealthMatters
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GI needs to have a seat at the table where healthcare policies are being made. Get started with GI advocacy here, and learn how to use your voice for your patients and profession.
Do you want to be sitting at the table or on the menu? I urge my fellow American gastroenterologists and hepatologists to get involved with advocacy! American Gastroenterological Association (AGA)
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