What do you think are the Top 10 Unanswered Research Questions for the Future of Rare Disease #Research in Australia? 👩🔬⚗🧫 ✍️ Survey closes soon on 23 December. 𝐂𝐨𝐦𝐩𝐥𝐞𝐭𝐞 𝐭𝐡𝐢𝐬 𝐬𝐡𝐨𝐫𝐭 𝐬𝐮𝐫𝐯𝐞𝐲: https://lnkd.in/g-6mwjgk Rare Voices Australia and The Kids Research Institute Australia (formerly Telethon Kids Institute) are conducting a Rare Disease Research Priority Setting Partnership Project. Your input will inform a public report to guide rare disease research advocacy. #RareDisease #Research #Advocacy
Rare Voices Australia’s Post
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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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Today, on World Sickle Cell Awareness Day, we are witnessing a growing global acknowledgment of the significance of sickle cell disease for individuals and communities. From heightened advocacy endeavors to groundbreaking research innovation, the push for change is gaining traction. Let's persist in raising awareness and providing support to those impacted. #WorldSickleCellAwarenessDay #SickleCellDisease #Advocacy #HealthEquity
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Antimicrobial Resistance Patient Survivor and Advocate • Founder: The AMR Narrative • Chair: WHO Taskforce of AMR Survivors
How can we promote patient advocacy for Antimicrobial Resistance (AMR)? On the 20th of June, join us for the 1st of a webinar series, co-organised by The AMR Narrative and European Patients' Forum which will focus on the impact of AMR on various patient groups. To learn more and register, visit: https://lnkd.in/eyW35HWy #theAMRnarrative #PatientAdvocacy #AMR #AntimicrobialResistance
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Head of Cell & Gene Therapy @ ICON plc |Collaboration Expert| Strategic Innovator| Change Agent| Entrepreneur
If you are planning on attending #WorldOrphanEU congess in Barcelona next week and you are interested in learning more about practical and effective approaches for involvement of #patient advocacy within your asset development strategy, highly recommend you popping along to this session! #iconplc #biotech #raredisease #cellandgenetherapies
On 24 October, join ICON experts, Bojana Mirosavljevic and Meghan Morgan-Smith at 11:10am at #WorldOrphanEU for a presentation on practical approaches to including patient advocacy organisations in your drug development program. Learn more. https://ow.ly/K6Fe50TCUJQ
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Professor & Head, Department of Dermatology, St George Hospital, University of NSW, Sydney
Around 20% of the population develop an autoimmune disease in which their own immune system attacks and destroys their own organs - eg the brain (#MS), joints (#rheumatoid arthritis), the skin (#pemphigus, #pemphigoid, #vitiligo #lupus, #dermatomyositis, #scleroderma) hair (#alopecia areata), kidneys (lupus, #nephritis), liver (#hepatitis), pancreas (type1 #diabetes), thyroid (overactive&underactive #thyroiditis), heart (myocarditis, #pericarditis), muscles (myositis), nerves (ALS, MND, #neuropathy), eyes (iritis). We need safer treatments for these conditions that don’t kill the patients in the process, just as we have safer targeted therapies for cancers nowadays.
The IPPF believes in the power of collaboration. During #AutoimmuneAwarenessMonth, we raise awareness for all autoimmune diseases to drive advancements in advocacy, awareness, education, and research. Autoimmune Association
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Empowering C diff Advocacy, Supporting Community: Insights From the National C diff Advocacy Summit: The CEO and co-founder of the Peggy Lillis Foundation discusses highlights from the organization's 2024 National C diff Advocacy Summit. #finance #pharmacy #lifesciences
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EURORDIS-Rare Diseases Europe has expanded its 📚Open Academy courses with 🇩🇪German and 🇵🇱Polish translations - a reminder to take advantage of this valuable resource helping increase knowledge and skills in the rare disease advocacy and engagement space. #rarediseases
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Patient Advocate (background in blood cancer MDS), special interest in clinical trials, recent experience of burnout.
Great to be at this TransPerfect Life Sciences conference. Further to the points made already, here is an important one too: 3. Make it easier to support the support groups, the essential stakeholders. Restore unrestricted grants, instead of making patient organisations jump through hoops to get funds. The time & effort required to request grants are a real barrier to conduct the work. Overworked patient associations, need to use their time and energy to do advocacy, not complete endless forms to get the funds to do the work. #patientgroups #advocacy
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Join us tomorrow for the first of a series of webinars that are putting #patiens in the middle of the discussion. Hosted by the European Patients' Forum and The AMR Narrative, the first one of the series will focus on patient advocacy on #AMR in the #EU. ❓ How much awareness is there around AMR in patients communities? ℹ What kind of information is missing and what are the challenges in spreading awareness? 📣 How can we use the patient's voices better to improve the advocacy on this issue? 👇 Register now to join us in this very timely discussion!
Only two days to go! The European Patients' Forum and The AMR Narrative will host the webinar “Patient Advocacy on AMR in the EU: where do we begin?”. This event kicks off a series of three webinars focusing on the impact of AMR on various patient groups in the EU. Designed as a dialogue platform, it will amplify the voices of patient organisations and strengthen advocacy efforts against #AMR. Don't miss out, register here: https://bit.ly/4etXHji
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