Niemann-Pick UK actively works to raise awareness about the harmful stigma associated with rare diseases and disabilities, as well as supporting collaborative research, and believe that the patient and community voice is essential to the successful development of new therapies
LDA Research has seen a growing enthusiasm for the use of online platforms such as Teams and Zoom in medical market research and there’s no sign of it slowing.
As many as 200 million children globally have a rare disease, yet most aren’t diagnosed for years after birth. Instead, parents face an array of difficult symptoms often dismissed by doctors as “typical” developmental delays. In honor of FOXG1 Syndrome, Awareness Month this November, we’ll look at this disease as an example. I’m the mother to a little boy with FOXG1 Syndrome, and I, too, was once dismissed by doctors—to the point where I felt powerless and alone, with nowhere to turn to help my sick baby.
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