CEPCAL - Colaborativa para Enfermedades Poco Frecuentes en el Caribe y América Latina (CEPCAL)转发了
?? Last week in Mexico City, took place the 2nd Meeting of #RareDiseases in Caribbean and LATAM, hosted by CEPCAL - Colaborativa para Enfermedades Poco Frecuentes en el Caribe y América Latina (CEPCAL) ???? Doubtlessly an outstanding collaborative effort involving stakeholders from academic institutions (#UNAM), scientific societies (Asociación Mexicana de Genética Humana), PAGs (Cebras México Mujer México), pharma (Asociación Mexicana de Industrias de Investigación Farmacéutica, A.C. (AMIIF), and molecular testing industry (Illumina), among others, gathered to discuss unmet needs for people living with rare diseases (#PLWRD), and pathways to address them. ?? Shared by Chiuhui Mary Wang from RARE DISEASES INTERNATIONAL, the 5 A's for #OrphanDrugs resume in: Availability, Affordability, Accessibility, Acceptability, and Awareness. ?? Other identified bottlenecks for #PLWRD include: genetic testing confirmation, proper epidemiological characterization (e.g., registries such as #REMEXER), local healthcare/regulatory agencies policy shaping and, representation of hispanic latin population in international browsers such as #ClinVar. ?? Additional information can be found in the following links: - CEPCAL: https://lnkd.in/g_R7hKbg - Rare Diseases International: https://lnkd.in/gS9rPMdh - W.A.I.T. FIFARMA 2024 Report: https://lnkd.in/gTCeMQJH - REMEXER: https://lnkd.in/gUFUH5MY - PENSEMOS EN CEBRAS: https://lnkd.in/gNKaUh2f
Thank you, Alfredo, for this enlightening update on the 2nd Meeting of #RareDiseases in Caribbean and LATAM. It’s heartening to see such a robust collaborative effort aimed at addressing the multifaceted challenges faced by people living with rare diseases. The comprehensive approach involving stakeholders from academia, pharma, and advocacy groups like Cebras México highlights a truly integrated effort. Could you share more about the specific outcomes or actionable insights that emerged from this meeting? How do you envision these initiatives influencing policy changes or improving patient outcomes in the near term? ?? Shine on ??
Thank you, Alfredo Ramirez, for your comments and feedback. This Congress was indeed an exceptional collaborative effort, and every moment invested was truly worthwhile. In due course, we will share those actionable insights that emerged from the sessions and discussions held throughout the event. It was a pleasure seeing you there. Jennifer Mac.
Clinical Medical Manager - Rare Diseases, Novo Nordisk Mexico
2 周Hi Marieke, thanks for reaching! I'd be glad to have a talk on this regard. Have a nice Sunday.