🌎✈️ Before heading to the INPDA Face-to-Face Meeting in Iguazu Falls, our INPDR Clinical Research Associate, Solomon Mbua, travelled to Porto Alegre, Brazil for two important site visits. 📍 Hospital de Clínicas de Porto Alegre The team gave Solomon a warm welcome and shared their great progress in entering data into the Registry. Find Solomon below with the dedicated study coordinators. 📍 Casa dos Raros A true game changer for rare diseases! Casa dos Raros provides free rare disease diagnostics to anyone worldwide in a state-of-the-art facility. Solomon had the chance to meet with Prof. Roberto Giugliani and Dr. Carolina Fischinger, who are leading inspiring work in the field. We are proud to collaborate with such committed partners, making a difference for the Niemann-Pick community globally 💙 We’re looking forward to meeting the whole community at the Face-to-Face and continuing to learn together! #NiemannPick #RareDisease #INPDR #Registry (fb)

Exciting news — our new INPDR merch have just arrived in time for the upcoming INPDA Face-to-Face meeting! Despite the setback with the fire at our office, which sadly means we don’t have much merchandise this year, we continue moving forward. We’re looking forward to getting these set up, meeting the community at the Face-to-Face, and sharing thoughts together during the INPDR Forum. If you’d like to support us as we recover from the office fire, you can do so here: https://www.gofundme.com/f/urgent-appeal-save-npuk-after-devastating-fire?fbclid=IwY2xjawM05rZleHRuA2FlbQIxMABicmlkETFneDdGd05uSW5hM0RBNUtxAR6SfJje_Jhwko-V4VO-_Kvu2l3Tt68BW-O3xK0DyTK9Dkh6AGXThVn56eTP1Q_aem_4w07y1MNlPx5FASdoXhNIwhttps://www.gofundme.com/f/urgent-appeal-save-npuk-after-devastating-fire?fbclid=IwY2xjawM05rZleHRuA2FlbQIxMABicmlkETFneDdGd05uSW5hM0RBNUtxAR6SfJje_Jhwko-V4VO-_Kvu2l3Tt68BW-O3xK0DyTK9Dkh6AGXThVn56eTP1Q_aem_4w07y1MNlPx5FASdoXhNIw #INPDR #NiemannPick #RareDisease #Community (fb)