At UCB, our work to offer differentiated solutions to more people living with #psoriasis is fueled by collaboration with advocacy groups, HCPs, and the psoriatic disease community. Together, we can make a meaningful difference. #PsoriasisActionMonth https://lnkd.in/e3SfqxX2
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Empowering individuals impacted by chronic inflammation/invisible conditions and disabilities | 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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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
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The impact of EU policy and advocacy on progress with treatments for rare disease https://lnkd.in/edEm4Yea It is widely understood that patients and their families face a number of challenges in accessing diagnosis and appropriate, timely treatment. In this update, we explore how policy and advocacy play a key role in overcoming challenges within the field of rare disease. https://lnkd.in/edEm4Yea #Market Access #HEOR #RareDiseaseDay #WeAreAvalereHealth
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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 impacted by chronic inflammation/invisible conditions and disabilities | 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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📣JUST LAUNCHED: Discover the 🆕 #Vision2030 advocacy in action report, and explore how we can leverage industry actors' expertise and resources to improve #OralHealth and reduce the burden of disease globally. 🤝Let's join forces to deliver optimal oral healthcare for all. 👉 https://lnkd.in/dp7kFQz2
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Raising awareness for rare diseases is essential for improving early diagnosis, treatment, access to support, research, advocacy, and ultimately, the quality of life for individuals living with these conditions. #RareDiseaseDay #ShowYourRare #Awareness #Support #RareDiseaseAwareness #battendisease #battendiseaseawareness
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Assistant Dean Student Affairs, University of Arizona College of Medicine, Director of Inflammatory and Aging Skin Research Program
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.
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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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❓️ Did you know that congenital hyperinsulinism has its own Wikipedia page? ✍️ In August 2023, Team CHI met with experts in the HI field and Wikipedia authors to edit and compile a comprehensive article detailing the symptoms, causes, diagnoses, and history of HI, as well as the many patient advocacy groups and Centers of Excellence working to support patients! 🔗 You can find the full Wikipedia article here: https://lnkd.in/eAFFjU_m #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia
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