Niche recruitment – hunting for unicorns
Senior research manager Rachel Barnes shares insights into how LDA Research recruits niche respondents and hard to reach patients worldwide for our clients Over the
Senior research manager Rachel Barnes shares insights into how LDA Research recruits niche respondents and hard to reach patients worldwide for our clients Over the
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 consultant, Andrew Grant, highlights the shared common experiences of rare disease patients discussed in our Rare Together podcasts
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.
When Taylor Coffman went to give birth, she knew there would be risks and challenges, but she didn’t expect to trigger a rare disease that almost killed her multiple times. Luckily she survived to be a mother and advocate for all patients.
Following our Rare Together podcast with Taylor Coffman about living with the aggressive rare disease atypical Hemolytic Uremic Syndrome or Complement-Mediated Pregnancy-Induced Thrombotic Microangiopathy, we asked her how to make rare disease voices heard on a larger and more lasting scale.
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