PNH Global Alliance

?? The PNH Global Alliance Advocate Development Program (ADP) comes to and end! ?? From December 2023 to November 2024, ADP participants engaged in both webinars and in-person sessions covering a variety of topics designed to equip advocates with essential knowledge in science and advocacy, both locally and globally. The program included disease-specific topics such as understanding PNH, current treatments, guidelines, and regulatory roadmaps, alongside cross-disease subjects like clinical research and regulatory processes using EUPATI materials. Participants explored crucial areas, including: ??PNH basics ??Medicine development ??Quality of life and patient-reported outcomes (PROs) ??Communication skills and tools for patients ??Health Technology Assessment ??Community Advisory Boards A highlight was meeting in person at the EHA Congress in Madrid 2024, emphasizing the importance of building meaningful connections within the community. A huge thank you to everyone who made this incredible experience possible! ????

??? Introducing EuroBloodNet: A Leader in Rare Hematological Diseases Care Established on March 1, 2017, EuroBloodNet is the European Reference Network dedicated to improving the lives of citizens affected by Rare Hematological Diseases (RHD). With the goal of ensuring equitable access to highly specialized healthcare across Europe, EuroBloodNet strives to reduce disparities in treatment and enhance the overall quality of life for patients, irrespective of their country of origin. EuroBloodNet collaborates closely with the European Hematology Association, the European Network on Rare and Congenital Anaemias, and various patient organizations, including EURORDIS. This partnership harnesses multidisciplinary expertise and innovative practices to promote excellence in RHD care throughout the EU. Their initiatives focus on enhancing access to outcome-based healthcare, promoting best practices in prevention, diagnosis, and clinical care, and facilitating ongoing medical education. They also emphasize the importance of inter-professional consultations for complex RHD cases and the effective use of health data to drive research and innovation. Through these efforts, EuroBloodNet is committed to fostering a healthcare environment where every individual with a rare hematological condition receives the specialized care they deserve. Check their work at: https://eurobloodnet.eu/ ! #RareDiseases #PNH #Hematological

?? Introducing the International PNH Interest Group (IPIG): IPIG is a global network of over 400 specialized physicians from 55 countries across 6 continents ??. Their members are dedicated to advancing knowledge and improving care for patients with paroxysmal nocturnal hemoglobinuria (PNH) and related disorders. As the only global professional society focused exclusively on PNH, IPIG connects some of the world’s top clinicians and researchers at the forefront of patient care and scientific breakthroughs ????. Through collaboration, IPIG works to enhance treatment options and provide the highest standard of care for PNH patients worldwide. #PNH #PatientCare #GlobalHealth #PNHResearch #IPIG ??

?? On the 10th of October, we celebrated World Mental Health Day! ?? Living with PNH can be challenging, but remember, you are not alone. Together, we can build a supportive community where every patient feels heard, valued, and empowered. Patient organizations play a vital role in providing a safe space for sharing experiences, finding resources, and advocating for better care. Let's continue to support each other, raise awareness, and break the stigma around mental health. ?? #WorldMentalHealthDay #PNHCommunity #YouAreNotAlone #MentalHealthMatters

?Exciting News? Maria Piggin, Chair of the PNH Global Alliance, was invited by Prof. Risitano and Dr. Notario to the Paroxysmal Nocturnal Hemoglobinuria: at the crossroads of somatic mutations, clonal expansion and immunity Meeting on 3 and 4 October in Florence, Italy. On October 3rd, Maria delivered a presentation on the PNHGA, highlighting activities that align with the PNHGA objectives to empower and educate the community ?? This included the PNH Advocate Development Programme ???? and the organization of our first-ever Global Awareness Day on October 12 ??

?????Excited to share that the Global PNH Alliance was proudly represented by Izabela from One in a Million at the Complement Masters: PNH 2024 in Tallinn, Estonia on Sept 20-21. Izabela highlighted the mission and vision of the Global PNH Alliance and the value it brings to the PNH community ?? This scientific exchange brought together PNH experts and hematologists from Europe, Latin America, Asia, Canada, and Australia to discuss the latest in disease management, research, and holistic care approaches ?? #PNH #GlobalPNHAlliance #PNHCommunity #ComplementMasters

#DidYouKnow that we’ve created a dedicated resource page on our website? ??? This page consolidates all the important information we've shared over the past few days, making it easy for you to stay updated on the latest developments and insights. Staying informed is crucial for effective management and treatment, and having all the resources in one place helps ensure you have the most current information at your fingertips. If you are #TreatingPNH, please consider referring this website to your patients and checking it out yourself to keep up with the latest updates. Your continued education and patient support are vital! #PNH #PatientCare #HealthcareResources #PNHAwareness2024

?? #DidYouKnow that accessing a clinical trial can be crucial for those living with Paroxysmal Nocturnal Hemoglobinuria (PNH)? Clinical trials offer access to new treatments and contribute to advancing medical research. ?? Clinical Trial Finder: We’ve made it easier for you to discover active PNH clinical trials through our website. Find the best match for your needs. Participating in clinical trials can provide early access to innovative therapies and contribute to the development of treatments that may benefit the entire PNH community. Visit our site and explore the possibilities today! #PNHClinicalTrials #ResearchAdvances #PNHAwareness2024

?? Important for PNH Patients and Caregivers ?? For those managing Paroxysmal Nocturnal Hemoglobinuria (PNH), connecting with the right resources is crucial. Here’s how you can make a difference: ??? Interactive Map for Easy Access: We’ve developed an interactive map to help you easily locate and contact?PNH specialists. This tool simplifies finding the right support and expert care. ???? Consult a PNH Specialist: Consulting a PNH specialist is essential for accurate diagnosis and effective management. These experts have the expertise to tailor treatment plans and offer the best care for managing PNH. Early diagnosis and specialised care can significantly improve outcomes. Use these resources to ensure you or your loved ones receive the best support possible. Share this post to help spread the word! #PNHAwareness2024 #DidYouKnow #TreatingPNH

?? ?? Today is the big day – Global PNH Awareness Day! ?? ?? ?? Thank you to everyone who has been involved in our awareness campaign. Your support, shares, and engagement have made a tremendous impact in raising awareness about Paroxysmal Nocturnal Hemoglobinuria (PNH). Together, we've spread vital information and supported those affected by PNH. #DidYouKnow that we still have more information to share with you?! Stay tuned for the resources we’ll be posting today! Keep an eye on our website for new updates and valuable information. Let’s continue to stand united in our efforts to improve the lives of PNH patients worldwide ?? Keep sharing, keep supporting, and let’s make every day a step closer to a cure. #GlobalPNHAwarenessDay #PNH #ThankYou #Awareness #Support #Healthcare #PNHAwareness2024