This is a vital resource that connects closely with the work of Niemann-Pick UK (NPUK). As a global initiative, the INPDR collects and organises critical data on Niemann-Pick diseases, providing researchers and healthcare professionals with the insights needed to advance understanding, treatment, and care. For NPUK, the registry represents a cornerstone of our collaboration within the International Niemann-Pick Disease Alliance (INPDA), offering a pathway to amplify the voices of individuals and families affected by these rare conditions. Together, NPUK and the INPDR strive to create a brighter future, turning shared knowledge into meaningful action for the Niemann-Pick community to accelerate progress to effective therapies, treatments, and one day we hope, a cure.
Learn more at: inpdr.org
EURORDIS – Rare Diseases Europe is a unique, non-profit alliance that unites over 1,000 rare disease patient organisations from 74 countries, all working together to improve the lives of more than 30 million people living with a rare disease in Europe collectively. As one of these member organisations, NPUK is proud to collaborate with EURORDIS to advocate for better policies, raise awareness, and drive meaningful change for individuals and families affected by Niemann-Pick disease. Together, we amplify the voice of the rare disease community and strive to make a lasting impact.
Learn more at: eurordis.org
Rare Revolution Magazine is a powerful platform dedicated to amplifying the voices of those affected by rare diseases, and NPUK is proud to be a charity partner. Through this partnership scheme, we work together to raise awareness of Niemann-Pick diseases and share the stories of our community, fostering greater understanding and driving change – naturally by amplifying our voice through Rare Revolution’s pioneering resource both the awareness of NPD and rare diseases more broadly is expanded. Rare Revolution Magazine’s commitment to highlighting the challenges and triumphs of the rare disease community aligns perfectly with our mission, making this collaboration a meaningful way to support individuals and families impacted by Niemann-Pick.
Learn more at: rarerevolutionmagazine.com