Prader-Willi Syndrome Association | USA’s Post

Cholangiocarcinoma can be hard to explain, so our Cholangiocarcinoma Foundation team works on ways to simplify information so we can educate the community about symptoms, diagnostics, talking to your provider, treatments, and more. As part of CCA Awareness Month, we developed this one-pager: https://lnkd.in/guJBYD-X. We encourage you to become familiar with it, and if you are interested in advocacy, please consider sharing it in your communities. You can get ideas on where to share it via our toolkit (https://lnkd.in/gWAtKfwH) #beclearoncca #ccaawareness #ccahope #cholangiocarcinoma #patientadvocacy

National Eczema Association The Eczema Expo is my favorite conference hands down. Such a great mix of patients, providers, advocacy groups and industry. Can tell… this is how progress happens for eczema patients. We talked: itch, aging, 7 types of eczema, and how to optimize your appointments.

Are you ready to complete your Week 3 sepsis advocacy action?   𝗦𝗘𝗣𝗦𝗜𝗦 𝗔𝗗𝗩𝗢𝗖𝗔𝗖𝗬 𝗔𝗖𝗧𝗜𝗢𝗡 #𝟯 Submit an Appropriations Request ✓   Congress is currently deciding what projects and initiatives will receive federal funding for the next fiscal year. Through an official request known as an appropriations request, Sepsis Alliance is asking Congress to set aside funding for the collection of privacy-protected sepsis data.   If you’d like to submit your own appropriations request in support of improved sepsis data, we hope you’ll join us for a free virtual training tomorrow, March 19, at 2PM ET. For those unable to join live, a recording will be available to view after the training is complete.   Visit https://lnkd.in/gT3R5N9G to register for the training today! To learn more about Raise Your Voice: A Month of Sepsis Advocacy Action and download our helpful toolkit, visit https://lnkd.in/edgcRSjX. 

Next week at our monthly Webinar, learn how OWN MG, a new group for myasthenia gravis is focusing on education to improve outcomes for patients with this rare but debilitating autoimmune disease. #autoimmune

After completing the 2024 Canada-wide CPFF patient and caregiver survey, we are proud, once again, to share the results with you. Patient and caregiver insights gathered over the years have fueled PF research, the creation of much needed support resources, advocacy initiatives, and awareness activities. In this year’s report, we are highlighting how CPFF research, including this survey, informs our actions. https://ow.ly/SRRa50Tl3ce #PulmonaryFibrosis #PatientAdvocacy

Yesterday was World Myositis Day. Did you know this observance has roots in the US dating back to 2006? TMA proudly partners with worldwide patient advocacy organizations to drive myositis awareness. TMA initiated "National Myositis Awareness Day" to be observed each year on September 21 as a way to drive awareness of these rare diseases among the public. A 2006 proclamation by the US House of Representatives endorsing National Myositis Awareness Day capped a years-long effort by TMA. While TMA expanded awareness efforts to the month of May as Myositis Awareness Month, September 21 continued to be observed. Learn more about World Myositis Day on TMA's website. https://lnkd.in/e9jZmJ2B #Myositis #MyositisWarrior #MyositisAwareness #TheMyositisAssociation #MyositisSupport #RareDisease #MYOMovement #MyositisLife #MyTMA #PatientAdvocacy #TheMyositisAgenda #MyositisAwareness #MyositisAwareness2024 #AwarenessForMyositis #WorldMyositisDay

We are sharing a reminder of our commitment, now and in the future, to continued collaboration among the #multiplemyeloma community. Along with doctors, scientists, patients, caregivers and advocacy organizations, we are dedicated to continue making strides in care. Interested in learning more? Read through our #multiplemyeloma resources. https://bit.ly/49dbffd #MyelomaActionMonth

March is Endometriosis Awareness Month, shining a spotlight on this often misunderstood condition. Let's seize this opportunity to advocate for change and support organisations like Endometriosis Australia https://lnkd.in/gfTMFC25 For 24 years, I've navigated the complexities of Endometriosis, diagnosed at 18 in 2000 when awareness was scarce. Despite hurdles, including a stage 4 diagnosis impacting my organs, I've persevered. Through medical trials and setbacks, I've maintained resilience. Together, let's empower and uplift those impacted by Endometriosis. Connect with me to collaborate on raising awareness and fostering change. #EndometriosisAwareness #Resilience #Advocacy

IMPORTANT-ATTENTION ALL PATIENT ADVOCATES For the first time in a long time, public awareness about advocacy is gaining a lot of traction, resulting in a dramatic increase in inquiries. If you advocate for patients and families, please join GNA, the largest and most visible national directory for Independent Patient Advocates. For years, this profession has been complaining about the number 1 problem: How to get clients. That is no longer the problem. Today, we need more advocates to get themselves out there so people who need you can find you. If you are an advocate, NOW is the time to get listed. It's free. You don't need to be a BCPA. You don't need a fancy website. The phones are ringing. GNA advocates are busy. We need your help. Please don't delay any longer. We're at a turning point and we must collectively meet the increasing need for our services.