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Looking out for the Zebras: advocating for the Rare Disease Community in Louisiana
This year, the Louisiana Rare Disease Advisory Council celebrated Rare Disease Day at the Capitol Gardens in Baton Rouge.
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Fourth Circuit Upholds OIG Advisory Opinion Process
On January 23, 2025, the United States Court of Appeals for the Fourth Circuit rejected a challenge to Advisory Opinion 22-19 (the “Advisory ...
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Patient Insight Institute announces partnership to improve cancer screening
A new collaboration in the US between the Patient Advocate Foundation's (PAF) Patient Insight Institute, Gilead Sciences and ...
NYS needs rare disease advisory council
As founder and chief executive of Believe in a Cure, a nonprofit organization advancing research for FOXG1 syndrome, a rare ...
Advocates, patients spread awareness during National Rare Disease Week
Advocates and patients with rare diseases spent Tuesday morning talking with lawmakers and educating the public as part of National Rare Disease Week.
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Parker joins Alzheimer’s Foundation advisory board
Dr. Monica W. Parker, a family physician and researcher, has been appointed as the chair of the Alzheimer’s Foundation of ...