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Why patient-centricity is key for rare disease clinical research

Adopting patient-centric approaches to help overcome the unique challenges related to clinical trials for rare diseases. ....

United States , Cezary Statuch , Alexion Pharmaceuticals , Translational Sciences , Head Of Medical Affairs International , Head Of Medical Affairs , European Commission , Member Cancer Centers , Office Of Rare Diseases Research , National Center , China Medical Affairs Network , Public Health , Committee Of The Medical Affairs Professional Society , Clinical Trials Day , Medical Affairs International , Latin America , Middle East , Medical Affairs , Executive Committee , Medical Affairs Professional , Human Genetics , Rare Disease , Being Counted , Advancing Translational Sciences , Rare Diseases , Orphanet Journal ,

Chiesi Global Rare Diseases Announces Publication of Results from Fabry Disease Patient Survey

/PRNewswire/ Chiesi Global Rare Diseases, a business unit of the Chiesi Group established to deliver innovative therapies and solutions for people living. ....

United Kingdom , United States , Lisa Berry , Giacomo Chiesi , Adam Daley , Chiara Travagin , B Corp , Chiesi Group Media Contacts , Berry Company Public Relations , Chiesi Group , Global Rare Diseases , Orphanet Journal , Chiesi Global Rare , Human Genetics , Cincinnati Children , Hospital Medical Center , Benefit Corporation , Global Rare , Chiesi Global Rare Diseases ,

Chiesi survey shows how Fabry drugs are failing patients

Chiesi survey shows how Fabry drugs are failing patients
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Sanofi Fabrazyme , Takeda Replagal , Protalix Biotherapeutics , Amicus Therapeutic , Orphanet Journal ,

Lung disease raises heart risk: Study

A recent study conducted by researchers at the University of Birmingham has found that having a lung disease may increase the likelihood of developing heart conditions, irrespective of other risk factors like smoking or age. ....

City Of , United Kingdom , University Of Birmingham , Orphanet Journal , Evening Times Of Oman , Orld News , Latest News , Reaking News , Man News , Ews Oman , Man News Agency , Uscat Daily , Man Observer , Imes Of Oman Newspaper , Ews In Oman , Man Time Now , Xpats In Oman ,

Safeguarding emotional well-being through rare disease journeys

The Undiagnosed Diseases Network Foundation (UDNF) has successfully co-led a critical discussion on mental health at the 2024 Rare Disease Summit. ....

United States , Cristol Barrett Oloughlin , Jamy Gray , Mary Morlino , Cristol Barretto Loughlin , Angel Aid , Disease Summit , Patient Navigator , Orphanet Journal , Rare Diseases ,