Children's National Hospital’s Post

Show your colors! Leading up to #RareDiseaseDay you will see quotes from our Leadership Team and Clinical Trial Network describing how important rare disease advocacy is to them.     Darrel Cohen, our CMO, shares his dedication to making a difference in the lives of people living with rare cancers.     #TeamViracta #raiseawareness #raredisease #rarediseaseday2024

Last month, we partnered with eight other organizations to celebrate the third annual ILD Day! Each ILD Day includes a very special webinar presentation. The webinar is now available on YouTube. This one-hour webinar presentation discussed why oxygen is a physiological problem with interstitial lung disease (ILD) and why supplemental oxygen is recommended. The webinar included important info about portable oxygen containers, how to get involved in oxygen advocacy initiatives, and where to find helpful information and resources. https://lnkd.in/gcxNcHfM

What does Scleroderma Awareness Month mean to you? We asked Greg Cohen Scleroderma Warrior, why Scleroderma Awareness Month is important and what this month means to him. And this is what he said: ''Scleroderma Awareness Month means an additional time to educate the world on what exactly this disease is and how it affects patients. While everyday is certainly an opportunity to spread knowledge, awareness, and stories, one specific month dedicated to the illness allows us to have a stronger, more direct focus. It is important to show people outside the Scleroderma community exactly what this disease is, how it manifests itself, and how it impacts not only patients, but family members and friends as well. Due to the fact that Scleroderma is not a top of the mind illness, it is important that we continue to highlight and drive attention to finding a cause through research and fundraising for research. It is also vitally important that we work to help support patients and their caregivers to assist in day to day needs, stress reduction, advocacy, and much more. Without awareness the ability to fund and research and patient support activities will be severely hindered. This is one of the primary reasons why Scleroderma Awareness Month is an important time of the year. At some point, someone will either know someone directly or indirectly who has this awful disease. The more one is educated, the better they are to understand and empathise with a patient.'' Find out what you can do and take action with us for Scleroderma Awareness Month: https://bit.ly/34FLWDE

September is Primary Biliary Cholangitis (PBC) Awareness Month. PBC is a rare, chronic autoimmune liver disease where inflamed bile ducts impair the flow of toxic bile acids, leading to bile duct destruction and cirrhosis.     Join us this month in supporting the PBC community by spreading awareness of this destructive liver disease. Be sure to check out the great resources from our patient advocacy partners, including the PBC Foundation: https://lnkd.in/dMsT6R9V      #PrimaryBiliaryCholangitis #PBCAwarenessMonth #ChronicDisease #RareDisease #LiverDisease 

As we enter the New Year, let's embrace a set of resolutions to help raise awareness, promote prevention and support those affected by melanoma and its rarer subtypes, fostering a brighter and sun-safe future for all. Explore our curated list of resolutions below and challenge yourself to select and adopt one or more to kickstart the New Year! Comment below which resolution you’ve chosen!

📅 Don’t miss our webinar tomorrow, April 30th, at 14:00 CEST to learn more about the key results of the latest Rare Barometer survey on newborn screening for rare diseases! ✨ Together, we will examine the survey’s key data and discuss how you can use the results in your own advocacy. To register, click here 👉 https://lnkd.in/ea9U5yrf #Screen4Care EURORDIS-Rare Diseases Europe

Together, We Save Lives: Are You In? In the fight against breast diseases, every voice matters. Have you ever thought about the power of community and collaboration in making a difference? Well, that's exactly what we're doing here in MPCG. As the Chairperson of FOGSI's Breast Committee, I've witnessed the incredible impact of collective action. From breast check- up drives to marathons, we're raising awareness and empowering women to prioritize their health. But it doesn't stop there – we're turning awareness into action, one screening at a time. So, are you ready to be part of something bigger? Join us in this movement for change and help us save lives together. Key Takeaways: Every voice counts in the fight against breast diseases – join the movement today! Collaboration with NGOs and healthcare professionals is key to success in awareness campaigns. Early detection saves lives – together, we can make a real difference. Want to make a difference? Get involved today and help us spread awareness about breast health in your community!

Exciting news! Check down below ⬇️

For more than half a century, the National Psoriasis Foundation has served individuals living with psoriasis and psoriatic arthritis through research, support, advocacy, and education. This year we are proud to announce $3.4 million in psoriatic disease research awards, including 9 awards to researchers studying the prevention, treatment, and mechanisms of PsA. Want to hear more about the latest research projects? Join us in Washington D.C. for The 2023 Research Symposium: A Cure for All and hear from leading experts in their field about health equity, the latest updates in psoriatic disease, and how we can work to achieve a cure, for everyone. https://lnkd.in/giiwezzf

Mesothelioma Awareness Alert! Did you know that #asbestos is the ONLY known cause of #mesothelioma? This aggressive cancer affects the lining of the lungs, heart, or abdomen. Understanding this dangerous causal link is crucial for prevention as well as advocacy. Let's spread awareness and work toward a world free of #asbestosrelateddisease. Learn more about these avenues of asbestos exposure: https://lnkd.in/gMKFR8st 🌐💙 #MesotheliomaAwareness #AsbestosFacts #MesotheliomaCauses