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42 articles from the last 7 days matching "support"

NewsRSS5 days ago

Upsher-Smith launches new DMD support websites for Kymbee treatment

Upsher-Smith Laboratories created two new websites to help people with Duchenne muscular dystrophy (DMD) who are using a medicine called Kymbee. One website is made for parents and caregivers of children with DMD and includes tips for talking to doctors and instructions for starting the treatment.

WHY IT MATTERSIf your child has DMD and is considering or starting Kymbee treatment, these new websites provide free resources to help you understand the medication and communicate with your healthcare team.
ℹ Good to knowDuchenne muscular dystrophyRead →
ResearchPUBMED6 days ago

'If You Don't Fight for Yourself, No One Else Will': An In-Depth Interpretative Phenomenological Analysis of Rare Disorder Care Advocacy in Aotearoa New Zealand.

Researchers in New Zealand interviewed 15 people with rare diseases and their caregivers to understand what it's like to get diagnosed and treated. They found that patients often have to fight hard to get answers and support because doctors don't know much about rare diseases. The study shows that people with rare diseases face similar challenges, even though their specific conditions are very different.

WHY IT MATTERSThis research directly documents the real-world barriers that rare disease patients face in accessing diagnosis and care in New Zealand, providing evidence that could help healthcare systems improve support for the estimated 300 million people worldwide living with rare disorders.
ℹ Good to knowRead →
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