A Psychologist Who’s ‘Been There’ Counsels Families Ravaged by SMA, Other Rare Diseases
Pennsylvania psychologist Al Freedman, PhD, has a uniquely personal perspective from which to advise caregivers of patients with a rare disease.
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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.
MDA Names Aspiring Teen Actress With SMA as a 2023 National Ambassador
The Muscular Dystrophy Association has named Leah Zelaya, 15, who has scapuloperoneal spinal muscular atrophy, as a 2023 National Ambassador.
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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.
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