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Teen with rare disease becomes star chef with an inspiring message

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This teen with a rare muscular disease has become a star chef — and he has an inspiring message... 

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Putting a face on rare, incurable diseases

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Raising awareness of children with rare diseases through art...

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Her Pregnancy triggered a rare disease

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Hereditary Angioedema... we helped a child from Russia with this rare disease. For years he was told it was allergies. Doctors in New York proved otherwise. Great article from Cosmopolitan discussing how hard it is to diagnose HAE...

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RACF Earns GuideStar's Highest Seal of Transparency

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Platinum Seal Allows Donors to Focus on Progress and Results...RACF, founded in 2012 as Rusfond USA, earned a 2019 Platinum Seal of Transparency, the highest level of recognition offered by GuideStar, the world’s largest source of nonprofit information. By sharing metrics that highlight progress RACF is making toward its mission, the organization is helping donors move beyond simplistic ways of nonprofit evaluation such as overhead ratios. To reach the Platinum level, RACF added extensive information to its GuideStar Nonprofit Profile: basic contact and organizational information; in-depth financial information; qualitative information about goals, strategies, and capabilities; and quantitative information about results...

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Two-Year-Old Sofia Arrives in Miami for Life Changing Orthopedic Surgery

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Two-year-old Sofia Vasenina arrived in the United States on Saturday with her mother, Kira. Little Sofia has pseudarthrosis, a bone fracture that has no chance of mending without intervention. In Russia, Sofia was diagnosed with the cause of this bone pathology: neurofibromatosis. It is a genetic disorder that causes tumors to form on nerve tissue that damages the bones and internal organs. Doctors in Russia warned that this disease is rare and complicated to treat.  Dror Paley, MD, FRCSC, is the founder (2009) and director of the Paley Institute in West Palm Beach, Florida. He trained under the guidance of Professor Ilizarov of Russia (Ilizarov...

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