MAP Patient Access Limited’s Post

Meet the panel for our upcoming webinar 🔔   Our next webinar aims to reflect on lessons learned from engaging with patient advocacy groups in the HTA process to better understand the pitfalls and barriers with rare disease patients and patient advocacy groups; as well as exploring the opportunities to amplify the influential voice of patients. Our expert panel includes: - Sujan Sivasubramaniyam, Head of Medical Affairs and Patient Advocacy, UK & Ireland at CSL Behring - Ellie Davies, Policy Analyst at Cystic Fibrosis Trust - Claire Blaney, Country Manager, Ireland at the MAP Group This webinar will explore the following questions: - How and when might patients, caregivers and patient advocacy groups be involved in NICE, SMC and NCPE HTA processes? - How can the biopharma industry engage with patients, caregivers and patient advocacy groups on upcoming HTAs, whilst meeting industry codes of practice? - How do patients and patient advocacy groups want to engage with biopharma companies? What is best practice and what should be avoided?   - What are patients’, caregivers’ and patient advocacy groups’ experiences of participating in HTA consultations and committees? There is still time to register for your free place here: https://lnkd.in/ewzUBSKy #patientadvocacy #HTA #patientengagement

Utilization of #biosimilars may decrease costs to the healthcare system and out-of-pocket costs for patients, but that can only happen if stakeholders in the healthcare system – including policymakers, physicians, patients, payers, etc. – are dedicated to this goal.

🌟 Introducing Maria Giannakos, PharmD, MBA, BCPS, BCSCP, FNHIA! As we conclude our Innovators of Home Infusion series, Maria shares her passion for advancing home infusion practices and her impactful role as a mentor for pharmacy practitioners. Recognized as a 2024 NHIA Fellow, she highlights the importance of research in demonstrating the value and safety of home infusion services. Maria's advocacy efforts aim to promote equitable access to these essential services, ensuring that patients receive the best care possible. Curious about Maria's inspiring journey and her efforts to promote equitable access to home infusion? 👇 Check out the full blog post in the comments below! #InnovatorsOfHomeInfusion #NHIAFellow2024

DO YOU DO THE HOKEY COKEY? Are you in out, in out with your relationships with patient organisations? It’s #PBCDay2024. Yesterday it was #WDAD2024. Both days are incredible at raising awareness about what life is like for patients and caregivers and both PBC and Duchennes are rare conditions. I’ve always found it difficult to understand what role I should have, personally and professionally, when it comes to participation in disease awareness days. Personally, I’m fortunate that I don’t have any conditions (although friends and family members do). Professionally I’ve worked in pharma companies who have medicines for/in development for both of these conditions. So I should be wholeheartedly putting my professional network and budget to boosting the activities and campaigns that emanate from these days. Or should I? Should we? Should pharma leave it to Patient Advocacy Groups and Patient Organisations to lead #DiseaseAwarenessDays or should pharma use their vast resources to boost. It’s like the Hokey Cokey (Pokey in the US) — pharma doesn’t know if it’s in out, in out and shaking it all about. Technically, the WHO states there are 11 World Health Days and other than #WorldAidsDay there are no specific days for specific diseases. That’s left firmly in the control of Patient Advocacy Groups. So is this the direction we should be following? I think it’s a hybrid of participation. More of a waltz where partnership is important — one leads, one follows then the dynamic naturally shifts. Not the Hokey Cokey when you turn around and … someone is gone. Which is what often happens with relationships between pharma and patient groups: pharma is doing the Hokey Cokey when it seems to want something from an organisation (data for an NDA, a video story for an internal team meeting, support for an HTA meeting). But patient organisations want a long term relationship — on disease awareness days, yes, but every day. Should we let patient organisations lead this dance because they are supporting their members Every Day. We are going to ask our #ISPEP members what’s best for good practice and for good relationships. #PatientEngagement #PatientOrganisations #PatientAdvocacy #rarediseases #PatientEmpowerment #PatientVoice #PatientEngagementProfessionals #PatientAffairs #PatientFocus #PatientCentricity #CureDuchennes #pbc

Is your organization passionate about addressing rare disease disparities and inspiring the next generation of medical professionals? The Call for Host-Site applications for the RDDC Fellowship is now open until March 15, 2024, at 11:59 pm EST! This program aims to empower fellows to tackle rare disease challenges, with emphasis on achieving greater equity for all. By collaborating with rare disease organizations, host sites provide invaluable experiences for fellows to make a difference. If your organization is interested in becoming a host site, apply here: https://lnkd.in/ei56vbjr Benefits of Hosting an RDDC Fellow: - Address unmet community needs - Infuse additional capacity and expertise - Cost-effective collaboration - Expand your network of rare disease partners - Inspire the next generation of healthcare professionals Help us spread the word by sharing this opportunity with other organizations who might be a great fit! Together, let's make a difference in rare disease advocacy and healthcare. #RareDisease #RDDC

Calling all individuals and organizations in health sciences and patient advocacy You have the responsibility to share and create awareness to advance the development of new medicines and therapies. Save lives. Make the world a happier, healthier place. But, statistically speaking, new products are likely to fail in clinical trials due to low patient enrollment. Because 41% of American adults don’t know anything about clinical trials. 91% have never been invited to take part, and even more have never participated. Clinials is joining the cause with Clinical Trials for All https://lnkd.in/gH57gHU4 #clinicaltrialsforall #clinicaltrials

Since 2017 AuSPEN has been developing a resource base from which to strengthen advocacy for improvements to the way intestinal failure services are provided in Australia. Using codesign principles, we are seeking to arrive at recommendations to establish a nationally adopted intestinal failure model of care that better meets patient needs and clinical requirements, ultimately resulting in optimized patient outcomes. ‼️ Clinicians of all professional disciplines who have had experience in caring for patients with chronic intestinal failure in the last 12 months are invited to provide input to help refine the key topics and care priorities for intestinal failure management. The Participant Information Form (which also contains the link to the survey tool) can be accessed through this link: https://lnkd.in/g6yH8JH9

Best way to reach generational audiences!

📢 MPE Year in Review 2024 is here! We are proud to share the accomplishments that marked this year, from representing patient needs in European health policy to delivering resources that empower member organisations. As we look toward 2025, we remain committed to advancing patient treatment, care and advocacy across Europe. 📄 Download the report here: https://lnkd.in/dD4ZFhwQ #YearInReview #Myeloma #ALamyloidosis #PatientAdvocacy

A brief but effective reminder that patients must be at the heart of clinical trial design, supply and implementation: https://lnkd.in/edVZRHRT