Multiple Clinical Trials Seek New Approach to Treating Prader-Willi Syndrome
Several investigational therapies are being evaluated for the treatment of Prader-Willi syndrome, a rare disease marked by persistent hyperphagia.
PWS Features
Weighing the Risks of Experimental Treatment Against the Burden of PWS
Caregivers of patients with Prader-Willi syndrome said they need new treatments so much that they are willing to accept the potential risks they may carry.
CF Features, DMD Features, Features, HAE Features, HD Features, HDFN Features, PWS Features, SMA Features
Experts Urge Rare Disease Screening for Everyone, Not Just Pregnant Women
The American College of Obstetricians and Gynecologists now recommends that all women—ideally before pregnancy—be screened for hemoglobinopathies.
ATTR-CM Features, FA Features, Features, GPP Features, HD Features, LAL-D Features, MDS Features, PWS Features, SSc Features
Advocates Pushing for Safer, More Accessible Air Travel for People With Disabilities
Rare disease advocacy groups are lobbying Congress to amend regulations to let people with disabilities remain in their wheelchairs during flights.
AATD Features, CF Features, Features, GPP Features, LAL-D Features, LGS Features, MDS Features, MG Features, Pompe Features, PWS Features, SSc Features
As Pandemic Restrictions Continue to Ease, Rare Disease Patients Still Fear COVID-19
Three years after COVID-19 was declared a pandemic, rare disease patients still fear the contagion—and must deal with the fallout.
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