Sciensus

Reflecting on the Ancillary Event at the World Orphan Drug Conference - USA As I connect with folks I met at the conference, I want to take a moment to reflect on the impactful ancillary event our company held. Titled "The Intersection of Art & Science – The Value of Both to Identify and Champion Rare Disease Patients," the event was truly inspiring. Michele Herndon, Program Director of the Undiagnosed Diseases Network (UDN) Foundation, shared her heartfelt story of losing her son to a rare disease and her mission to prevent other parents from experiencing a delayed diagnosis. Patty Welton, CEO of Beyond the Diagnosis, discussed her artwork and vision for the group, alongside her daughter Hana, who achieved a perfect SAT score despite living with Ehler’s Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome. Prior to the event, I was moved by a painting of Ford Parks, a patient living with CTNNB1, featured in Patty’s artwork collection. On the day after the ancillary event, I met his mother, Effie, a staunch advocate, and genuine friend. Kim LeBlanc’s discussion about her role at the UDN at Harvard Medical School resonated with me personally, as my daughter was seen at Duke Medical School, part of the UDN, and my son graduated from Harvard University in 2023 despite living with Facioscapulohumeral muscular dystrophy. Together, it takes a village to tackle rare diseases, and I feel honored to have met these resolute advocates. Photo taken during the ancillary event. From left to right: Michele, Patti, Kim, and me. #RareDisease #WorldOrphanDrugConference #ArtAndScience #UDNFoundation #BeyondTheDiagnosis #EhlersDanlosSyndrome #CTNNB1 #RareDiseaseAdvocates #HarvardMedicalSchool #DukeMedicalSchool #FacioscapulohumeralMuscularDystrophy #PatientAdvocacy #Sciensus

We’re proud to be partnering with the Financial Times for an insightful webinar on real-world data (RWD), exploring how a smart RWD strategy can boost patient engagement and demonstrate value — from accelerating market access to unlocking competitive advantage in today’s pharma landscape. Join us and a panel of industry leaders on 7 May. Register here to save your spot: https://lnkd.in/eh3x9ZY6 #RealWorldData #MarketAccess #LifeSciences #FT #FinancialTimes Alastair MacDonald

Did you spot Sciensus across Boston this week? From billboards to bus shelters, our brand lit up the city during the World Orphan Drug Congress USA. As the rare disease community came together, we were proud to be there, reinforcing our commitment to improving access to life-changing treatments for patients across Europe. Learn more about how we can help accelerate access to patients in Europe at: https://lnkd.in/endbKZzq #WODC #RareDisease #OrphanDrugs #LifeSciences #PatientAccess #OOH Alastair MacDonald Andrew Cummins

Updates from the World Orphan Drug Congress Hello everyone! I’m delighted to reconnect with old friends and colleagues at the World Orphan Drug Congress USA in Boston. Yesterday was a thrilling experience as I had the opportunity to moderate a preconference workshop titled, “Breaking Into Europe: Partnerships that Propel US Biotechs to Orphan Drug Success.” Additionally, I hosted and moderated an event titled, “The Intersection of Art and Science,” alongside partners from the Undiagnosed Disease Network (UDN) (Kim LeBlanc), the UDN Foundation (Michele Herdon), and the CEO of Beyond the Diagnosis (Patty Welton). Below is a photo of me (left to right) with my colleagues, Christian Tucat (our CEO), Mathieu Loiseau (our Director of Rare Clinical Services), Andrew Cummins (our VP of Access & Reimbursement), and Alastair MacDonald (our VP of Medical Affairs). Mathieu is holding the sign that was used to help direct traffic to our ancillary event, which was well attended by many wonderful folks from the rare disease industry. #Sciensus #RareDisease #UndiagnosedDiseaseNetwork #WorldOrphanDrugCongress

Day one at the World Orphan Drug Congress USA, where we held a session on: Driving Reimbursement Success in Europe with Real-World Evidence – A Case Study. Mathieu Loiseau and Andrew Cummins shared insights on: • How real-world evidence (RWE) supports cost-effectiveness and clinical value • Bridging data gaps for small patient populations • Navigating Europe’s complex reimbursement landscape Andrew shares: "When conducting real-world data studies, always remember to start early, collaborate with organisations, and view these studies as opportunities to bring more value to patients." To learn more about how we can help accelerate access to patients in Europe, visit: https://lnkd.in/endbKZzq #WODC #OrphanDrugs #RealWorldEvidence #RareDisease #LifeSciences #PatientAccess

Sciensus is pleased to announce that Kerry U. has joined the business to lead our Corporate Strategy function. With over 25 years of pharmaceutical and life sciences experience, Kerry’s appointment continues to strengthen our pharma capabilities as we work towards unlocking access to patients in Europe. Kerry Utton shares: “I’m excited to join Sciensus and bring my experience into this important sector of patient healthcare. I’m looking forward to working with my new colleagues as we seek to achieve our organisational objective of supporting a broader range of patients achieve better healthcare outcomes”. Read more: https://lnkd.in/evCXNCpn #LifeSciences #Pharmaceutical #CorporateStrategy #Sciensus

A fantastic turnout at the World Orphan Drug Congress USA for our workshop on: Breaking into Europe: Partnerships That Propel U.S. Biotechs to Orphan Drug Success. We explored: • The key challenges U.S. biotechs face in Europe • Strategies to navigate market complexities • How collaboration drives successful drug launches Alastair MacDonald shares: "PSPs are really important, not only in terms of the patient experience, but to your company, as they have been demonstrated to increase adherence and persistence to the tune of 10-20%." To learn more about how we can help accelerate access to patients in Europe, visit: https://lnkd.in/endbKZzq Our team is on-site for the remainder of the congress, come meet us to discuss how we can support your expansion into Europe. #WODC #OrphanDrugs #RareDisease #LifeSciences #MarketAccess #PatientAccess

Launching a rare disease drug in Europe has never been more challenging. With an increasingly stringent but fragmented regulatory landscape and diverse patient needs, pharma and biotech companies must develop a tailored, strategic approach to ensure success. But what are the key elements of a successful strategy? In a recent webinar, Sciensus’ Raymond A. Huml, Vice President Rare Strategy, and Andrew Cummins, Vice President Business Development, were joined by Kirsty Hoyle, CEO of Metabolic Support UK to discuss this very question. Read the full key takeaways here:https://lnkd.in/e8d2CwaX #OrphanDrugs #RareDiseases #Pharma #MarketAccess #LifeSciences #XTalks Xtalks

Just returned from #ReutersPharma2025 and I'm still processing the wealth of insights shared! While digital innovation dominated the agenda, what resonated most with me was the consistent reminder that technology must serve human connection, not replace it. For instance, as we race to digitise patient support programs (PSPs), we risk losing the empathy that drives treatment management. I've seen firsthand how even the most sophisticated digital tools fall short when patients feel isolated in their health journey. This is why our approach at Sciensus has always been to incorporate digitally-enabled PSPs that prioritise human touch with digital support. My biggest takeaway? The future belongs to organisations that view digital not as a cost-saving measure but as an enabler of deeper human connections in healthcare. As we implement new technologies, we must constantly ask: "Does this bring us closer to patients or create distance?" Also big kudos to Alastair MacDonald for his thought provoking presentation that outlined how pharma can do more with patient-reported data. We're sitting on a goldmine of insights that could transform both clinical outcomes and commercial success, yet most organisations haven't figured out how to effectively collect, analyse, and act on this information at scale. Also rumor has it he looks strikingly similar to Brad Pitt...if you attended our presentation you'd understand what I mean! Hiran Pandoria #DigitalHealth #PatientExperience #HealthcareInnovation #ReutersPharma

Are you in Boston for the World Orphan Drug Congress USA 2025? Join us on the 22nd April, for a networking reception featuring complimentary drinks, tapas, and an insightful discussion on: The Intersection of Art and Science – Illuminating the Rare Disease Patient Journey. This fireside chat will explore how creativity and science can collaborate to drive greater visibility and support for patients living with rare conditions. Speakers include: - Patricia Weltin, CEO, Beyond the Diagnosis - Kimberly LeBlanc, Director, Undiagnosed Diseases Network (UDN), Harvard Medical School - Michele Herndon, DNP, RN, Program Director, Undiagnosed Diseases Network Foundation (UDNF) Facilitated by: Raymond A. Huml, Vice President Rare Disease Strategy, Sciensus To learn more: https://lnkd.in/ei73yy_J #WODC2025 #RareDisease #LifeScience