Halifax West’s Post

Research in Peripheral Artery Disease suffers from wide heterogeneity of outcomes, making comparison and pooling data very challenging and in certain instances impossible! Our latest systematic review of studies in intermittent claudication highlights this massive issue https://lnkd.in/e5ZJt8xB! Another Systematic review in patients with Chronic Limb Threatening Ischaemia is to be published soon! The best way to tackle this major issue is to develop Core Outcome Sets in Peripheral Artery Disease and that is exactly what we are doing! For this, we need your help!! Join one of our focus groups to give your thoughts and opinions to shape the future research, generate better evidence, and improve patient outcome.

Moment of Realization Life's pivotal moments can dramatically shift our perspectives and actions. Such moments of realization redefine how we see ourselves and the world, influencing our values and behaviors. For instance, in Lyme disease research, realizing the power of community has been crucial. Join our survey to help improve testing and empower thousands facing this challenge. Your voice matters in reaching our goal of 100 responses. our survey: https://lnkd.in/e-hp_FH2

This week (December 1-7) is Crohn's & Colitis Awareness Week! 💜 Crohn’s disease and ulcerative colitis, part of the inflammatory bowel disease (IBD) family, impact millions worldwide. 🌎 At Alimentiv, we are dedicated to raising awareness and continuing to advocate for research that supports those affected by these chronic conditions. We are proud to play a pivotal role in advancing therapies that improve the lives of patients and their families. Together, we can make a difference. 👉 https://lnkd.in/gsmFidVv #Alimentiv #CrohnsAndColitisAwarenessWeek #GI #Gastroenterology #CrohnsDisease #UlcerativeColitis

Were you aware that this year, Rare Disease Day coincides with the rarest date of the year - February 29th? It’s indeed a ‘rare’ day for ‘rare’ diseases! 🤯 But why should we care about rare disease day? Well, the numbers speak for themselves. These statistics emphasise the need for conducting real-world studies for rare diseases because we can then gain insights into the natural history of the disease, assess treatment effectiveness and safety in diverse patient populations, and aid in informing patient-centered care, healthcare policy, and regulatory decisions. https://lnkd.in/eFQyR62s #rarediseaseawareness #realworldevidence

Please join us next Thursday, June 20 from 9 – 10:30 A.M. EST. as Dr. Guy Katz and Dr. Matthias Löhr lead an in-depth conversation on the pancreas in relation to IgG4-RD. Each speaker will make a short presentation, and then we will address questions submitted in advance. Specific issues include: ▪️ How frequently is the pancreas affected in IgG4-RD? ▪️ What are the different ways in which it can be injured? ▪️ How do we manage the acute and chronic effects on pancreatic disease? Register for the event and submit questions here: https://shorturl.at/mp7UW Please note, we will address as many questions as we can, mindful of time constraints. If you're unable to attend the live event, the recording will be available on our website and YouTube channel.

Media Advisory: The White House Office of Science and Technology Policy to Host White House Rare Disease ForumOn Wednesday, February 28, as part of the Biden-Harris Administration’s goal to improve health outcomes, the White House Office of Science and Technology Policy will host a forum marking Rare Disease Day and highlighting the Biden-Harris Administration’s commitment to supporting patients and families facing a rare disease and delivering progress against the nearly 10,000 known rare diseases that impact up to 30 million Americans.   Leaders from the Biden-Harris Administration and the private and nonprofit sectors will work together to: Elevate the experiences and expertise of people and families facing rare diseases; Share developments from the Biden-Harris Administration and rare disease community and learn from one another to accelerate progress; and Identify opportunities to improve rare disease diagnosis, advance research and access to innovation to deliver effective treatment, and boost support for patients and families. WHEN: Wednesday, February 28, 5:30 PM – 7:00 PM ET

I'm excited to share our latest blog post that delves into a groundbreaking discovery regarding a rare and devastating autoimmune disease affecting the Puerto Rican population. This research uncovers the underlying causes of the condition and discusses promising avenues for potential cures. Understanding and addressing this disease is crucial for improving the quality of life for those impacted. To learn more about this significant development, read the full article here: https://ift.tt/SKc5ihw.

ILD Day returns! Join us for a very special webinar presentation on Wednesday, September 18 at noon central time with Dr. Sonye Danoff, pulmonologist and Co-Director of the Johns Hopkins ILD/PF Program. This year, the topic of ILD Day is the path to diagnosis. Dr. Danoff will talk about: 🔹 How doctors recognize the disease 🔹 Finding the right treatments for you 🔹 Your care team and the roles they have in your journey 🔹 Advocating for yourself ✅ Registration is open now at https://lnkd.in/gCgZKCHc ❌ Can’t make it? Register anyway, and we’ll provide you with a link to the recording. 💭 What is ILD Day? ILD Day is a collaboration between the PFF and eight other organizations to raise awareness of interstitial lung disease (ILD). Interstitial lung disease is the umbrella term used for a large group of diseases with inflammation and/or scarring in the lungs. The inflammation and scarring can injure the lungs, making it difficult to breathe and get oxygen to the bloodstream. @arthritis.org @

Today marks Rare Disease Day, a global initiative observed on the last day of February to shed light on the impact of rare diseases and underscore the urgent need for research. Collectively, rare diseases are more common than we think, with over 7,000 different rare diseases affecting over 300 million people worldwide. Despite this, research funding remains scarce, primarily reliant on patients and advocacy organizations. Among these rare diseases is Glut1 Deficiency, a cause I personally support through Glut1 Deficiency Foundation This is the time of year to raise awareness, educate, and gather funds to support programs for patients, families, and dedicated scientists working tirelessly to enhance patient care and advance research for a deeper understanding, improved treatments, and, ultimately, a cure. Visit the campaign page to learn more about Glut1 Deficiency at https://bit.ly/3UZJBPq #Glut1Deficiency #RareDiseaseDay

Today marks Rare Disease Day, a global initiative observed on the last day of February to shed light on the impact of rare diseases and underscore the urgent need for research. Collectively, rare diseases are more common than we think, with over 7,000 different rare diseases affecting over 300 million people worldwide. Despite this, research funding remains scarce, primarily reliant on patients and advocacy organizations. Among these rare diseases is Glut1 Deficiency, a cause personally supported by President Neil Myers through Glut1 Deficiency Foundation . This is the time of year to raise awareness, educate, and gather funds to support programs for patients, families, and dedicated scientists working tirelessly to enhance patient care and advance research for a deeper understanding, improved treatments, and, ultimately, a cure. Visit the campaign page to learn more about Glut1 Deficiency at https://bit.ly/3UZJBPq #WilliamsCreek #Glut1Deficiency #RareDiseaseDay