Nicola Boyd’s Post

It’s gratifying to see the progress that can be made by working together to make a difference for people with psoriasis and psoriatic arthritis. Hear about the power of collaboration below and click through to the article to read more about the UPLIFT Innovation Program and Amgen’s latest episode of #ImpactSquared. #MyCompany

💙 Honouring Cystic Fibrosis Awareness Month! 💙 As May unfolds, it brings with it a powerful opportunity to shed light on a condition close to my heart: cystic fibrosis. This month is dedicated to raising awareness about cystic fibrosis (CF), a genetic disorder affecting the lungs and digestive system. And we're immensely proud to stand alongside Cystic Fibrosis NZ in this crucial mission. Recently, I had the privilege of attending the launch of Cystic Fibrosis Awareness Month, joined by my dedicated colleagues Barnaby Luff - Marketing Leader, Simone Brown - Dynamic Leadership and Impactful Partnerships, Dirk Potgieter. Together, we showed our continued support for this foundation, reaffirming our commitment to making a difference in the lives of CF patients. One aspect of my work that particularly resonates with me is our focus on addressing the nutritional needs of CF patients. Nutrition plays a pivotal role in managing this condition, and it's a privilege to collaborate with a brand that shares my commitment to making a tangible difference in the lives of CF patients. Every morning, as I set foot in the office, I'm reminded of the impact we're making together. Knowing that our collective efforts are helping to improve the quality of life for CF patients fills me with a profound sense of fulfillment. It's not just a job; it's a calling—a calling to make a positive difference in the lives of others. So, as we navigate through Cystic Fibrosis Awareness Month, let's continue to raise our voices, spread awareness, and foster a community of support and understanding. Together, we can create a world where CF patients thrive, empowered by knowledge, compassion, and unwavering support. #CFawareness #CysticFibrosisStrong

Diabetes education is a valuable and underutilized resource!

April 5th is designated in our community as "unofficial" Barth Syndrome Awareness Day. However, you can help us make it OFFICIAL! It's super easy. Go to the link below and enter your information. It populates a pre-written message (you can add more to it) and simply hit send and it will go directly to your Representative!! Rep. Morgan McGarvey of Louisville has already co-sponsored this resolution after we met his office in person in Washington DC. Let's get everyone else on board and also thank Rep. McGarvey. Why April 5th: Barth syndrome, affecting approximately 300 patients globally (140 in the US), stems from a mutation in the TAFAZZIN gene, also known as G4.5. This condition manifests in severe systemic issues, including cardiac abnormalities and recurrent infections, often proving fatal in childhood due to heart failure or infections. What can you do: Help push our awareness and continue to be our support system. On Feb 20th, 2024 Rep. Paul Tonko (NY-20) and original cosponsors Rep. Gus Bilirakis (FL-12) and Rep. Ralph Norman (SC-5) introduced H.Res. 1025 Expressing support for the designation of April 5, 2024, as "Barth Syndrome Awareness Day". Why do we need an awareness day: National Awareness Days highlight the need for increased awareness, improved diagnosis, new therapies for Barth syndrome and improve regulatory pathways for ultra-rare drug development. If you know me or know one of the 30 million people who are affected by a rare disease, support from the outside community is one of the greatest things we can have. Most of us are small internal communities. Help us out by filling out the form and sending to your representatives. When one community is helped, all rare disease communities are helped and share if you can. #NotTooRareToCare #BarthSyndrome #RareDisease #RareDiseaseDay2024 #Elamipretide #Advocacy #FDA https://lnkd.in/eztdMxz7

Today is the day! Listen to our experts at the World Orphan Drug Congress USA where they will be presenting, “Putting Science First in Rare Disease Studies” at 12 PM ET. Our VP, Consulting, Robin Bliss and Manager, Project Management, Anthy Tsatoumas will guide you through the successful conduct of a complex rare disease clinical trial. 💡The presentation is filled with actionable insights. Don't miss out on the opportunity to enhance the success of your project. We can't wait to share our knowledge with you! #WODC #ClinicalTrials

🌍✨ Today marks World Asthma Day 2024! ✨🌍 On this day, let's celebrate the remarkable resilience of individuals living with asthma. They defy the constraints of their condition, surpassing limits, and embracing life to the fullest. At Chiesi we are honored to share compelling stories of patients who have defied the limitations imposed by their condition. Today, we shine a spotlight on their inspirational journeys, highlighting their resilience and determination in overcoming the challenges of living with asthma. Behind these inspiring individuals lie stark statistics: Asthma is one of the most common chronic non-communicable diseases that affects over 260 million worldwide, leading to 450,000 annual deaths, many of which could have been prevented. Join us in honoring our patients and raising awareness about this respiratory disease. Happy World Asthma Day! 🌍 #Limitless #Sustainability #RespiratoryHealth

#AMR is an important issue - if you want an update on progress being made on addressing the ‘AMR silent pandemic’ do register for this free webinar. Looking forward to chairing the webinar, insightful updates from the expert panel and an engaging Q&A.

Come to join us at #EuropeanExpertPE meeting in Mainz Oct24. Highest PE experts covering a top scientific program about this life threatening disease, with an overall focus on a #multidisciplinaryapproach, ranging from diagnosis to #interventionaltherapies. At Boston Scientific we are committed to the scientific community to improve PE outcomes, so do not hesitate to contact us if you would like more information about our value proposition. #ExpertPE #PulmonaryEmbolism #CatheterDirectedTherapies #USAT

To mark Rare Disease Day 2024, this week we are exploring four critical elements to sustaining rare disease innovation in Europe. Today focuses on requirement #1: Great science. The fact that 95% of approximately 6,000-10,000 known rare diseases still lack any approved treatment is down to a combination of clinical and economic hurdles to innovation. First and foremost, innovation requires excellent science – without which there is no question of industry investment in developing and launching a novel therapy. Scientific discovery is progressive and often difficult to predict. Basic research – often supported by public funding and performed in academic institutions – plays an essential role in generating the foundational scientific understanding and technological capability which form the building blocks for future drug development. Industry generally enters the stage once scientific leads are established to transform original science into a clinically tested and approved product, in what is invariably a long and risky process. In Isabelle Laurence and colleagues' recent publication exploring the factors which drive drug development, we examine how rarity exacerbates the scientific challenges to innovation. Indeed, with what little is known about most rare diseases and their populations, great underlying science is even more important, and challenging, to attain. Public policy plays a critical role in driving scientific discovery to expand the field of clinically viable areas for innovation. Though, in isolation, this is not enough to drive rare disease development in Europe, it is an essential pre-requisite. Read on to learn more: https://bit.ly/42UC0Uf #RareDiseaseDay2024 #RareDiseaseDay #RDD2024 #LightUpForRare #ShareYourColours #RareDiseases #RareDiseaseAwareness #RareDiseaseInnovation #Dolon

The best things in life often don’t come easy, and success in our industry is no different.   The path to market for rare and orphan disease drugs is one filled with stumbling blocks and hurdles to overcome, but luckily AscellaHealth are experts when it comes to navigating that path.   I detail the challenges and opportunities along the route to market in this month’s edition of International Clinical Trials (ICT)  produced by Samedan Ltd, as it looks ahead to next year’s Rare Disease Day.   In the feature, I discuss the rare disease industry and the way we battle through hurdles that arise to continue making a difference for those living with a rare disease.   You can read the article by picking up a copy of International Clinical Trials or read it online, see link below. 👇   What challenges and opportunities have you come up against along the way? Let me know in the comments below.   #clinicaltrials #rarediseases #orphandrugs