Reflecting on an inspiring weekend at the NORD Rare Disease Summit with the MAF team! It was a privilege to join the J+J luncheon and learn firsthand about their dedication to transparency and innovation in rare disease research. Meeting Lisa Shea and her incredible team brought a personal touch to this shared commitment to better outcomes for rare disease communities. Looking forward to seeing how our efforts together continue to make a difference! #NORD2024 #RareDiseases #HDFN #maternalalloimmunization
What an inspiring week at the #NORDSummit2024 focusing on this year’s theme “Equitable Access to Innovation!” I had a chance to connect with patient advocates, colleagues, and regulatory and policy experts to discuss our continued commitment to driving innovation, access, and collaboration in rare disease. There were many impactful sessions highlighting that patients are 'lived experience experts' and their perspectives need to be built into the fabric of drug discovery, development and delivery particularly given the heterogeneity of rare diseases. ?There were also important discussions aligning regulatory and policy issues to ensure access to critical therapies once approved so that everyone has a chance at the best care. Highlights include: ?? Meeting with so many patient advocates and stakeholders across various rare diseases underscores how we are stronger together and can partner to elevate patient needs and drive equitable access. ?? Discussions with Karen Jones at wAIHA Warriors around our poster presentation: “A glimpse into the patient experience: Stressors described by individuals living with wAIHA” to foster a community of learning to enhance care for patients living with warm autoimmune hemolytic anemia (#wAIHA). ? ?? ?Meeting with Maternal Alloimmunization Foundation to continue to raise awareness around hemolytic disease of the fetus and newborn (#HDFN) ?? ??J&J-sponsored luncheon to overview on our Transparency Report to patient advocates led by colleagues Ninya Bostic and Kelly Fitzsimmons