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WordPress es un software web galardonado, utilizado por millones de webmasters en todo el mundo para la construcción de webs o blogs. SiteGround se enorgullece de acoger esta instalación de WordPress en particular y proporcionar a los usuarios múltiples recursos para facilitar la gestión de sus sitios web WP: Expertos en WordPress Hosting SiteGround ofrece […]
WordPress is an award-winning web software, used by millions of webmasters worldwide for building their website or blog. SiteGround is proud to host this particular WordPress installation and provide users with multiple resources to facilitate the management of their WP websites: Expert WordPress Hosting SiteGround provides superior WordPress hosting focused on speed, security and customer […]
In Testimony, Foundation Board Chair Urges Senate to Act on Life-Saving Legislation On Wednesday, October 3rd, Mark Dant testified before the Senate Health, Education, Labor and Pensions Committee’s Children and Families Subcommittee on the importance of expedited treatments for rare disease patients. Mr. Dant urged Congress to pass the OPEN ACT (Orphan Product Extensions Now, Accelerating […]
Monday February 29, 2016, Novato, Calif. – On Rare Disease Day, the EveryLife Foundation for Rare Diseases applauds Senator Richard Pan, MD (D-Sacramento) for introducing SB 1095. The Foundation is joined by the MLD Foundation, National MPS Society, Acid Maltase Deficiency Association (AMDA), the Ryan Foundation, Aidan Jack Seeger Foundation, and Jonah’s Just Begun Foundation to […]
Friday, September 16, 2016, Novato, Calif. – On September 16th, Governor Jerry Brown signed into law Senate Bill 1095 (Pan), sponsored by the EveryLife Foundation for Rare Diseases. The bill ensures that babies born in California will be screened for a disease within two years of its addition to the federal Recommended Uniform Screening Panel. Senator […]
Newborn Screening Receives Funding Boost in Florida, Legislation Sent to Governor Florida Governor Rick Scott has reached an agreement with state legislators on a budget for 2018, including provisions to implement screening for X-ALD and additional funding for Florida’s newborn screening centers, which have historically been significantly underfunded. This funding is crucial as it will […]