by Madaline Spencer | Nov 27, 2024
Sofia De la Garza, advocate and mother of a patient with Vascular Ehlers-Danlos syndrome (VEDS), discusses her diagnosis as well as her work in advocacy. VEDS is an inherited connective tissue disorder that is caused by defects in collagen. It is...
by Madaline Spencer | Nov 14, 2024
Judith Thompson, Rare Disease Population Health Strategy Lead at UCB, discusses social determinants of health in rare diseases. As Ms. Thompson explains, social determinants of health are the conditions in which people live, work, and play. They impact...
by Madaline Spencer | Nov 1, 2024
Louie Lee, PhD, Neurological Physiotherapist at University College London, discusses clinicians’ perspectives on implementing self-management support programs for people with neuromuscular disorders. Implementing self-management support programs...
by Madaline Spencer | Oct 29, 2024
Louie Lee, PhD, Neurological Physiotherapist at University College London, discusses self-management of neuromuscular disorders (NMDs). NMDs are often progressive, rare, incurable and limited treatment options. As Dr. Lee explains, these factors are...
by Madaline Spencer | Oct 25, 2024
Cathy Turner, Project Manager for DMD Care UK at the John Walton Muscular Dystrophy Research Center at Newcastle University, discusses the TREAT-NMD Advisory Committee for Therapeutics (TACT). TACT was established in 2009 with the goal of providing...
