Interested in the rare disease atypical HUA? Looking for a snapshot of what's important to aHUS patients & caregivers, or global advocacy efforts? https://lnkd.in/e793kNic If you saw our recent newsletter, you'd know! Invitation's open, so check it out. #aHUS #cmTMA #TMA #complement #SHUa #newsletter
The Atypical HUS Alliance Action’s Post
More Relevant Posts
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Antimicrobial Resistance Patient Survivor and Advocate • Founder: The AMR Narrative • Chair: WHO Taskforce of AMR Survivors
As a patient advocate for AMR during the past 11 years, I always find myself asking this question: "How can we empower patients and boost advocacy towards Antimicrobial Resistance (AMR)?" On the 20th of June 2024, between 3pm - 4pm CEST, the European Patients' Forum (EPF) and The AMR Narrative will jointly host a webinar titled, “Patient Advocacy for AMR in the EU: where do we begin?”. Working together, this will be the first of a series of 3 webinars on the impact of AMR in terms of various patient groups in the EU and will serve as a platform for dialogues driven by patient organisations to support advocacy efforts. Join our discussion around: - How are patient communities impacted by AMR? - What interventions or ideas could be used to boost patient advocacy on AMR? - What are the biggest challenges towards improving advocacy and understanding of AMR? The webinar will be held in English and is open to everyone both in the EU and globally. Register for the webinar here: https://lnkd.in/eyW35HWy #theAMRnarrative #AMR #AntimicrobialResistance #PatientAdvocacy
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Regional Adviser Control of Antimicrobial Resistance at World Health Organization Regional Office for Europe
Super important discussion on patient advocay on #AMR!
Antimicrobial Resistance Patient Survivor and Advocate • Founder: The AMR Narrative • Chair: WHO Taskforce of AMR Survivors
As a patient advocate for AMR during the past 11 years, I always find myself asking this question: "How can we empower patients and boost advocacy towards Antimicrobial Resistance (AMR)?" On the 20th of June 2024, between 3pm - 4pm CEST, the European Patients' Forum (EPF) and The AMR Narrative will jointly host a webinar titled, “Patient Advocacy for AMR in the EU: where do we begin?”. Working together, this will be the first of a series of 3 webinars on the impact of AMR in terms of various patient groups in the EU and will serve as a platform for dialogues driven by patient organisations to support advocacy efforts. Join our discussion around: - How are patient communities impacted by AMR? - What interventions or ideas could be used to boost patient advocacy on AMR? - What are the biggest challenges towards improving advocacy and understanding of AMR? The webinar will be held in English and is open to everyone both in the EU and globally. Register for the webinar here: https://lnkd.in/eyW35HWy #theAMRnarrative #AMR #AntimicrobialResistance #PatientAdvocacy
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Sarcomas are often misdiagnosed, which can lead to incorrect and ineffective treatments. In fact, up to 57% of sarcoma diagnoses are changed after a second review by pathologists. We need more specialized experts in sarcomas to ensure accurate diagnoses on the first try – and the least invasive treatment plans for patients. SPAGN works with patient advocacy groups all over the world to raise awareness and advocate for patient-centered research in sarcomas to improve patients’ chances of a successful treatment. #SarcomaAwarenessMonth2024 #EarlyDiagnosisSavesLives
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VP of Sales at ActionPotential.AI | Leading Conversational Marketing Solutions for Small Businesses
Advocacy is important!
Congratulations to Neura Health medical director Thomas Berk, MD FAHS, for his participation in the 2024 Headache on the Hill advocacy event in Washington, DC! This event is critical for raising awareness about migraine and headache diseases and advocating for better policies and resources. This year’s asks include cosponsoring the Safe Step Act, cosponsoring the NIH Clinical Trial Diversity Act, and supporting robust funding for headache care for veterans. Advocates, including Dr. Berk, traveled across the country to represent their state and advocate in partnership with the Alliance for Headache Disorders Advocacy. “It’s remarkable how many of our patients are here advocating, from all over the county. They’ve all expressed gratitude for their care from Neura Health,” observed Dr. Berk. We’re so proud of Dr. Berk and our patient advocates who have dedicated so much of their time and energy to champion better migraine and headache care for everyone. #PatientAdvocacy #HOH2024 #MigraineAwareness #HeadacheAwareness
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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
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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
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Increasing evidence supports improved patient outcomes in #peripheral arterial and deep venous intervention with use of #IVUS. More education, awareness, and advocacy are needed to help shape the future of lower extremity revascularization. Read more ➡️ https://lnkd.in/gCqAVhx5
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This post, and the subsequent information on the 'sign up' link for the Global Patient Movement Catalyst, is very aligned with what we think about alot, particularly in the research space! How do we create that paths that allow consumers to 'choose their own adventure' in advocacy, personally and/or professionally? How do we effectively and consistently embed the 'I' and 'we' voices into systems? We've signed up to keep an eye on this movement and where there are opportunities to learn from and inform this movement, particularly in research-related spaces. #patientvoice #consumerinvolvement #patientengagement #healthconsumers #health #research #clinicaltrials #therapeuticdevelopment #patientadvocacy #PPI #CCReW
"Lived experience is the 'why' and the 'how' that health systems need" - Professor Lara Bloom, CNE shares in her blog article these & other forward-looking reflections on the future of patient advocacy, professionalisation, and the role of the new 'WHO resolution on social participation in health' - great read 👉 https://lnkd.in/esZW_xBw #iParticipate4UHC #socialparticipation The Ehlers-Danlos Society The Synergist.org Nicholas Brooke Maximiliane Rauch Daniela Espindula Mothci International Alliance of Patients' Organizations (IAPO) #PEOF
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Award-winning Rare Disease Advocate | Disability advocacy & Consulting | Public speaker | Diversity & Inclusion | Medical translator & interpreter
Disability Pride Month has just started, and I’m thrilled to celebrate by sharing my recent podcast episode with Dr Natasha Punia on Invisible Insights by InflamMed! In this episode, you’ll get to know what led me to patient advocacy, how I manage my well-being while being involved in this field, and other important topics. Thank you, Natasha, for inviting me and for our engaging discussion on topics that are crucial not just to me but to our entire community. Tune in and listen on the link below! #DisabilityAdvocacy #PatientAdvocacy
Empowering individuals navigating chronic inflammation | Founder @InflamMed | Tackling Health Inequalities @St Christopher's | Storyteller
🎙️ New Episode Alert on Invisible Insights by InflamMed! 🌟 Join us as Adéla Odrihocká, a passionate advocate for rare diseases, shares her profound journey and the critical challenges within the healthcare system. Adéla discusses the lengthy diagnosis journeys, the impact of gender bias, and the necessity of holistic care. She highlights how digital tools are revolutionising advocacy and improving patient care, underscoring the importance of patient involvement in policy-making and decision processes. 🔗 Dive deeper into the discussion on how Adéla balances her advocacy with personal health and why initiatives like a national coordinator in the Czech Republic could be a game-changer in healthcare. Don't miss her insights on creating more inclusive and supportive environments for those with rare diseases. 👉 Watch now: https://lnkd.in/eF56hVdi #RareDiseases #ChronicIlness #ChronicInflammation #HealthcareAdvocacy #InvisibleInsights #InflamMed #PatientAdvocacy #HolisticCare #DigitalHealth
#7 From Diagnosis to Advocacy: Transforming Rare Disease Care with Adéla Odrihocká
inflammed.substack.com
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The IFPA Conference 2024 unites clinical experts, allied health professionals, advocacy organizations, and patient organizations to share the latest research and updates on Psoriasis and Psoriatic Arthritis (Psoriatic Disease). #IFPAConference2024
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