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📊 ACFDR Data Update - December 31, 2023 The Australian Cystic Fibrosis Data Registry (ACFDR) plays a vital role in improving clinical outcomes and directing research for cystic fibrosis (CF). It provides essential data for clinical trials and advocacy efforts, ultimately helping Australians with CF. Current Statistics: - Total Individuals with CF: 3,798 - Adults (18+ years): 2,212 - Children & Adolescents (0–17 years): 1,586 New Diagnoses in 2023 Total: 68 - 53 were diagnosed before their first birthday 👶 - 6 were diagnosed between ages 1 and 17 🧒 - 9 were diagnosed over age 18 🧑 - 0 cases had an unknown diagnosis date ❓ This robust data is crucial for informed decisions, better outcomes, and effective advocacy. Your support helps us leverage this information to drive positive change and enhance the lives of those living with Cystic Fibrosis. If you would like to read more, please follow: https://lnkd.in/gf-9CuZj #CysticFibrosis #ACFDR #CFCommunity #Advocacy #HealthData

The Rare Barometer survey on the diagnostic odyssey of people living with a rare disease shows that the average diagnosis time is close to 5 years in Europe. This study is the largest conducted to date measuring diagnostic delays for rare diseases and their main determinants, encompassing responses from over 13,300 people from 104 countries worldwide, living with more than 1,900 rare diseases! In this webinar, the Rare Barometer team will showcase in-depth how the results have been and could be used to support your advocacy actions. They will also address any questions you may have about maxmising the impact of these resources in your work! 🗓️ 30 January ⏰ 2:30pm to 4:30pm CET Register now! ➡️ https://lnkd.in/exNZmhXc #RareDiseases #Survey #diagnosis #advocacy #evidence #EvidenceBasedPractice

This will be an invaluable insight into how to better advocate for people with rare diseases.

The more we speak up, speak out, and speak loud about antimicrobial resistance, The more we create awareness and educate more people about it, The more people are able to make informed decisions about antimicrobial use, And the more we prevent antimicrobial misuse. Let's continue to speak out!

Project Lyme is sharing our top 10 projects of 2024: #1 — We distributed national Public Service Announcements to educate the public on the dangers of Lyme disease. To date, they have aired 23,926 times in 30 states nationwide. In our PSAs, Project Lyme tells the stories of Rylyn Clark and Pippa Daspit, two young children who are recovering from Lyme disease. Children are at the greatest risk of contracting Lyme disease, and delayed diagnosis can prevent them from living a normal life. Learn more at www.projectlyme.org #projectlyme #lyme #lymedisease #tickbornediseases #coinfections #lymediseaseawareness #chronicillness #health #medicine #tickbite #lymewarrior #science #advocacy #research #parenting #newyear #newyearresolutions

Even though I am a patient with lived experience of Antimicrobial Resistance (AMR), learning how to become an advocate was a process. Last month, our charity The AMR Narrative hosted a successful webinar in a 3 part series in partnership with the European Patients' Forum and now in a lead up to the United Nations High-Level Meeting on Antimicrobial Resistance (AMR) we look forward to hosting our 2nd online advocacy capacity building event! Don't forget to register: https://bit.ly/4bDVlvH 📆 On 29 August 2024 (3pm CEST), join us for the webinar “How do we use our voices to reach a wider community for AMR?”. Find your answer to the questions: 💡 How can we define patient advocacy for AMR? 💡 What could work well in terms of reaching a wider community for AMR? 💡 How to communicate such a complex topic like AMR in an engaging way? Featuring Pernilla Rönnholm (Carer with Lived Experience), Andrea Caputo Svensson, Ph.D. (ReAct - Action on Antibiotic Resistance), Laura Alonso, Ana Navarro (AEMPS, EU-JAMRAI 1), James Malar (Stop TB Partnership), Dr. Danilo Lo-Fo-Wong (Regional Adviser Control of AMR at World Health Organization Europe) and moderated by Claudia Louati (European Patients' Forum), Francesca Chiara (The AMR Narrative) and me (Patient Survivor and The AMR Narrative). Register: https://bit.ly/4bDVlvH #theAMRnarrative #AMR #UNGA2024 #PatientAdvocacy #AntimicrobialResistance #PatientsIncluded

🌟 Dana's Journey with SMA 🌟 Dana is a dreamer, or rather, as she puts it, an idealist. In the next year, she would like to move out of her parents’ house.  Dana has always had plenty of plans for herself, but recently her outlook on the future has changed. One year ago, at the age of 27, she received her official diagnosis of SMA. Soon after, she was approved for treatment through SMA medicines. Her story shows that access is greater than access to medicine: it is also access to accurate information, well-informed care providers, and a patient community with shared experiences. Read the full story here: https://lnkd.in/dCQm8eC4  Do you have a story to share about access to SMA treatment? Contact Laura Gumbert at laura.gumbert@sma-europe.eu. Let’s work together to improve access for everyone. 💬✨ #SpinalMuscularAtrophy #RareDisease #AccessToTreatment #OdySMA #SMAAwareness #PatientAdvocacy #SMACommunity #EarlyDiagnosis

When TV shows accurately depict Sickle Cell Disease!!! It’s a WIN for the sickle cell community on a global level. In this episode of TV show “The Pitt”, we see how one knowledgeable provider in the ER can make a world of difference for patients living with sickle cell. These stories not only raise awareness but also emphasize the power of understanding and advocacy in healthcare. You can stream “The Pitt” on Max @streamonmax #SickleCellAwareness #HealthEducation #ThePowerOfOne #SickleCellDisease #SickleCell #SickleCellProdigy

Access to syringe services programs (SSPs) is a critical, evidence-based strategy to improve public health outcomes for people who inject drugs. Yet, these lifesaving programs remain vastly underutilized. In her recent blog, Dr. Nora Volkow of the National Institute on Drug Abuse highlights the profound impact SSPs have in reducing overdose deaths, preventing infectious diseases, and connecting individuals with treatment and support services. Despite their proven effectiveness, stigma and policy barriers continue to hinder their widespread adoption. As someone deeply committed to harm reduction and recovery, I believe it's time we challenge misconceptions and advocate for broader access to these vital services. SSPs are not just tools for prevention—they are pathways to dignity, health, and hope. Let’s have the conversations which matter. How can we work together to expand these programs and create a more compassionate, effective approach to addressing substance use? Read the full blog here: https://lnkd.in/gGqUmg4Z #HarmReduction #PublicHealth #HarmReductionSavesLives #Advocacy

How do we use our voices to reach a wider community for Antimicrobial Resistance (AMR)? Next week on 29th August 2024, in partnership between The AMR Narrative and The European Patients' Forum join us for a webinar about the impact of AMR on several patient groups. Participate in the discussion about: 💡 How can we define patient advocacy for AMR? 💡 What could work well in terms of reaching a wider community for AMR? 💡 How to communicate such a complex topic like AMR in an engaging way? Register here 👉 https://lnkd.in/ePMekAxD #theAMRnarrative #AMR #AntimicrobialResistance #PatientAdvocacy #antibiotics #patients