The International Niemann-Pick rare disease registry (INPDR) is a desperately needed collaboration between clinicians, scientists, researchers and patient associations to collect clinical, genetic, diagnostic and outcome data on patients with NPD type A, B and C across Europe.
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Niemann-Pick Disease Group (UK)
Niemann-Pick Disease Group (UK)
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INPDR | inpdr.org Reviews
https://inpdr.org
The International Niemann-Pick rare disease registry (INPDR) is a desperately needed collaboration between clinicians, scientists, researchers and patient associations to collect clinical, genetic, diagnostic and outcome data on patients with NPD type A, B and C across Europe.
INPDA : NPC
http://www.think-npc.com/about/inpda
Think Again. Think NP-C ►. Advisory committee ►. Could it be NP-C? Improving the care of Niemann-Pick patients across the world. Who is the International Niemann-Pick Disease Alliance (INPDA)? The INPDA is an alliance of non-profit organisations supporting those affected by Niemann-Pick disease. This organisation operates as a global network to exchange information, experience and knowledge of Niemann-Pick disease. More information about the INPDA can be found at http:/ www.inpda.org/. A number of materi...
Could it be NP-C : NPC
http://www.think-npc.com/could-it-be-np-c
Think Again. Think NP-C ►. Advisory committee ►. Could it be NP-C? Could it be NP-C? Niemann-Pick type C disease (NP-C) is a treatable disease. It affects all ages. Could it be NP-C? NP-C is a progressive, irreversible and chronically debilitating lysosomal storage disease. It is caused by a defect in lipid transportation within the cell. This leads to intracellular accumulation of lipids in the brain, liver and spleen causing the symptoms of NP-C. Why is early diagnosis of NP-C critical for patients?
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INPDR
Training Materials and Publications. International Niemann Pick Disease Registry. A new concept in disease registries. The International Niemann Pick Disease Registry (INPDR) aims to:. Collecting anonymised patient data from across the world in a consistent format. Gain Knowledge and Insight -. Establishing the natural history of NP diseases. Coordinating research efforts globally. Enable Rapid Diagnostics -. Facilitating equitable access to state of the art diagnostic tests.
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InPDUM | International People's Democratic Uhuru Movement
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InPDUM Toronto
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