In June, our Patient Engagement Team attended the British Inherited Metabolic Disease Group Meeting in Newport, South Wales. This event is the largest meeting of its kind in the United Kingdom and Ireland, bringing together researchers, clinicians, patient groups and industry for a program of talks and networking opportunities. Our team was able to catch up with members of our professional network and foster new collaborations with those eager to contribute to our mission.
Citrin Foundation’s Post
More Relevant Posts
-
Tax Quarterback & Advisor | 12+ year Partner to C-Suite Leaders | 2024 WIB Boardroom Ready | Maximizing Cash Flow through Tax Strategy, Process and Collaboration
Myasthenia Gravis can mimic stroke symptoms (facial weakness, double vision, for example) but it's an autoimmune disease that can be triggered by infection or even stress. Treatments exist for symptoms but the condition cannot be cured. An antibody test can help confirm diagnosis. #spreadingawareness #raredisease #myastheniagravis #executivewomeninbio #womeninbio-metroNY #lifesciences
Global Lifesciences Commercial Executive | Board Member| Digital Thought Leader | Strategic Launch Expert Committed to Improving Patient Health
June 1 marks MG Awareness Month and it was a truly immersive experience to be LIVE on the set of Behind The Mystery: Myasthenia Gravis to open up the conversation to broad audiences about living with this rare disease. UCB amplifies the voices of people living with this rare, autoimmune disease, so that we can learn more about them, but also from them. I spoke to Olga Villaverde about how UCB is inspired by rare disease patients, and it is when we lean in and listen to their journey, we can understand their lived experiences. It was exciting to meet Montel Williams in person especially since I’ve watched his daytime TV show and he asked me about the healthcare infinity loop. He asked me about how patients get stuck in their rare disease journey, when there is a delayed diagnosis, a lack of recognition for their disease, and also about barriers to accessing support networks and care. #MGstrong #MG #myastheniagravis #raredisease #BehindTheMystery #RareDiseaseAwareness Watch the show now: [https://lnkd.in/eNiJ9T_i] The views and statements contained in the video reflect the speaker’s opinion, experience, or professional/clinical experience. These views do not necessarily reflect the opinions of UCB. This video is sponsored by UCB for educational and informational purposes. The healthcare professionals are paid consultants of UCB, Inc.
-
Unlocking sustainable financing for surgical care systems in LMICs is central to our model. But that alone is not enough. Our model combines financing with convening and coordinating key actors on a neutral partnership platform, so that we can co-create powerful projects together, which are locally led. Since announcing SURGfund at the 76th World Health Assembly in 2023, we have begun implementing our model in practice, showing very positive initial results. 🇹🇿 Here's how SURGfund is enabling local partners to improve outcomes for fracture patients in Tanzania: https://lnkd.in/dT4zkESF 🌐 Here's how SURGfund works: https://lnkd.in/e6d5PEqD
-
-
Family Doctor, Associate Professor - leading the Global Center for Sustainable Healthcare - gcsh.org
Check out our paper in JAMA today! https://lnkd.in/dMetaAE2 We analyzed disease awareness campaigns officially recognized by WHO, Cochrane or the US government. We found that campaigns were often more promotional than informative; highlighting benefit much more than harm - and at least two thirds had commercial involvement but rarely disclosed this clearly. If campaigns intend to inform the public rather than promote products, they should strive for balanced messaging that quantify both benefits and harms - and they should transparently disclose any financial interests in their messaging. From team: Loai Albarqouni - Mary O' Keeffe - Karsten Juhl Jørgensen - Steven Woloshin Check out the Global Center for Sustainable Healthcare at: https://lnkd.in/dw2gK5MK Göteborgs universitet Sahlgrenska Academy at University of Gothenburg
-
-
Together we can make a difference
News from Western Australia! LaunchR, a new network of rare disease experts, is forming to develop precision medicines for the toughest cases. With collaborations spanning globally, this initiative aims to revolutionize healthcare for millions worldwide. Read the press release here: https://lnkd.in/e6YPx2-N
-
-
I am thrilled to be part of this exciting initiative from inception, together with founding Board members, Professor Robert Perneczky and Professor Frank Jessen, and fellow co-founders Robert Hyde, and Tracy Willmott 🚀 Registries are powerful tools for conducting observational studies of the disease with impact on public health surveillance, research, and intervention, and inform and engage policymakers. InRAD is an international practice-based registry aiming at accelerating progress in the fight against Alzheimer's disease and other dementias. Join us, let's make a difference together! More details below 👇 #alzheimers #alzheimersdisease #realworldevidence #realworlddata #registry #datascience #InRADnetwork #ADPD2024
InRAD is an international, practice-based registry for Alzheimer’s Disease and other dementias. At InRAD, we envision a world where personalised care and timely treatments are accessible to all affected by Alzheimer's and related dementias. InRAD, currently in development, will offer collaborative database tools and research capabilities at no cost, aiming to deepen understanding of dementias through epidemiological and therapeutic outcomes studies, including effectiveness and safety. Guided by founding Board members Professor Robert Perneczky and Professor @Frank Jessen, who will be joined by additional international Board members soon, InRAD is driven by a co-founding team; Robert Hyde, Johan van Beek, and Tracy Willmott who bring expertise in real-world evidence, medical operations and medical communications respectively. If you are interested in more information about sponsorship opportunities to be part of this initiative, please get in touch. https://lnkd.in/gPneuCA5 #InRADnetwork #DementiaCare #AlzheimersAwareness #AlzheimersResearch #RealWorldData #ADPD2024
-
-
🌐💙At Bingli, we've developed a cutting-edge methodology for the development and validation of algorithms aimed at early diagnosis and screening of populations at risk of rare diseases. 🌐💙 www.bingli.eu/screening This is not just about technology; it's about making a tangible impact on the lives of those affected by these rare conditions. Our commitment goes beyond innovation—it's about bringing hope and perspective to those who need it the most. Early diagnosis can be a game-changer in both first and second line settings, offering a window of opportunity for timely interventions and improved outcomes. With our new methodology, we are taking a significant step towards empowering healthcare professionals and researchers in their quest to identify and address rare diseases promptly. Let's use this Rare Disease Day to not only raise awareness but also celebrate the power of smart innovation in healthcare. 💪💙 #RareDiseaseDay #HealthcareInnovation #BingliAdvancesHealthcare
-
-
#RareDisease: Are you attending #NORD2024? If yes, here are 3 steps to make it a success: 1. Today, DM us to schedule a meeting time, or email Dianna@MyHealthTeam.com Dianna Higgins (Cronin). 2. During NORD, visit MyHealthTeam at booth #314. 3. View our rare disease research posters in NORD’s poster room (posters #IR019 and #PCB005). We look forward to listening to your objectives and exploring how we can help with clinical trial recruitment, disease-state research, and awareness and education fueled by patient insights. #PharmaMarketing #RareDisease #PatientInsights #Healthcare #NORD2024 MyHealthTeam
-
-
Did you know that Phreesia Life Sciences' PatientConnect platform activates thousands of patients each month with awareness initiatives? Our awareness month campaigns run throughout the calendar month, and sponsors are guaranteed 200,000 patient engagements, curated, evidence-based Phreesia creative, and the spotlight on their logo and mission. Additionally, we report on activity results and patient survey data. Interested in becoming a sponsor? Learn how you can partner with Phreesia to improve outcomes on a broad scale during health awareness months: https://bit.ly/49dlYX2.
-
-
Yesterday was International Clinical Trials Day. At our core is perseverance, a fierce determination to overcome any obstacle regardless of setbacks, on behalf of patients and their loved ones. We place greater value on what we can achieve together than on what we can do alone because the needs of those we serve always come first. We will not be bound by doing what’s been done before. Instead, we free ourselves from preconceived notions to discover solutions that advance patient care. Our mission is clear: Otsuka-people, creating new products for better health worldwide. Learn more at https://bit.ly/43RuLwk #InternationalClinicalTrialAwareness #InternationalClinicalTrialAwarenessDay
-
✴️ 𝗖𝗶𝗻𝗲𝘀𝘁𝗲𝗮𝗺® - 𝗘𝘃𝗶𝗱𝗲𝗻𝗰𝗲 𝗶𝗻 𝗔𝗰𝘁𝗶𝗼𝗻: ⚠️ An Innovative Approach to Wound Care Chronic wounds often come with challenges like #malodour, #exudate, and social stigma. Cinesteam® presents a promising solution. A study involving eleven patients with various wound types, conducted over 14 days across six centres in the UK, highlights its effectiveness in managing these issues in a clinical setting. 🔑 𝗞𝗲𝘆 𝗙𝗶𝗻𝗱𝗶𝗻𝗴𝘀: 🔑 ‼️ 𝗢𝗱𝗼𝘂𝗿 𝗥𝗲𝗱𝘂𝗰𝘁𝗶𝗼𝗻: Cinesteam® effectively reduced wound odour, improving patient comfort and social interactions. ‼️ 𝐏𝐚𝐭𝐢𝐞𝐧𝐭 𝐒𝐚𝐭𝐢𝐬𝐟𝐚𝐜𝐭𝐢𝐨𝐧: Patients reported improved well-being and social engagement, feeling less isolated and more confident. ‼️ 𝐂𝐥𝐢𝐧𝐢𝐜𝐚𝐥 𝐒𝐞𝐭𝐭𝐢𝐧𝐠: This study confirms the efficacy of Cinesteam® in managing malodour in malignant, radiation-treated wounds. 👀 Explore the full details in our poster: https://lnkd.in/dizeXnWn 🚩 Learn more about Cinesteam®'s innovative approach to wound care and its impact on patient outcomes and message us.
-
