The opening of this year's application period coincides with 'Rare Disease Week,' a global awareness week honoring the 300 million people affected by rare diseases.
This year, Harmony is expanding Progress at the Heart to more comprehensively address a wide range of health disparities and inequities affecting the rare neurological disease community, which often hinder access to optimal treatment and care among medically underserved patients.
'Progress at the Heart demonstrates our commitment to catalyzing substantial change within the rare neurological disease community by addressing a wide range of disparities, including those related to race, ethnicity, gender, sexual orientation, education, income, and geographic location,' said
Additionally, Patients at the Heart will encompass initiatives that help address the unique needs of individuals with rare neurological disorders experiencing excessive daytime sleepiness. It will also focus on individuals living with Fragile X syndrome, a rare condition characterized by intellectual and developmental challenges resulting from a mutation in the FMR1 gene, which is the leading known cause of both inherited intellectual disability and autism spectrum disorder.
'As a company dedicated to developing innovative treatments for these conditions, we deeply empathize with the challenges individuals and their loved ones face when it comes to effectively managing them. We are steadfast in our commitment to innovate and collaborate with communities and caregivers to bring new solutions aimed at empowering people living with rare neurological disorders and their families to live their lives to the fullest,' McCanless emphasized.
Applications for both funding programs will be accepted from
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