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    Dad of 'oldest ever' child with rare disease on continuing his fight
    Dad of 'oldest ever' child with rare disease on continuing his fight

    Dad of 'oldest ever' child with rare disease on continuing his fight Read more

    Yahoo! News - Dec 28
    Couple donates $11 million to Lurie Children’s Hospital to support work in genetics, rare diseases
    Couple donates $11 million to Lurie Children’s Hospital to support work in genetics, rare diseases

    The donation from Don and Anne Edwards aims to speed research, treatment and diagnosis for children with rare and genetic disorders. Read more

    Chicago Tribune - Dec 10
    Thousand Oaks parents hope to raise money for treatment for son's rare disease
    Thousand Oaks parents hope to raise money for treatment for son's rare disease

    A Thousand Oaks family is raising money to support what could be the first-ever gene therapy for their son's rare and terminal disease, INAD. Read more

    Abc7 - Dec 03
    With New Elevidys Warning Approved, Rare Disease Battles At FDA Continue
    With New Elevidys Warning Approved, Rare Disease Battles At FDA Continue

    FDA will require a black box warning for a Duchenne muscular dystrophy (DMD) therapeutic marketed by Sarepta Therapeutics, the latest development in a conflict over the treatment that has persisted across administrations and through a major change in FDA regulatory philosophy. Read more

    Insidehealthpolicy - Nov 17
    Distraught woman could not work out why she had rare disease... until she made horrifying discovery about dad's identity
    Distraught woman could not work out why she had rare disease... until she made horrifying discovery about dad's identity

    After years of suffering from Marfan syndrome - a genetic condition that affects connective tissue and can cause heart, eye, bone and lung problems - Summer McKesson made a devastating discovery. Read more

    Mail Online - Nov 02
    STAT+: Roche suffers a fresh blow as India’s Supreme Court allows generic sales of its pricey rare disease drug
    STAT+: Roche suffers a fresh blow as India’s Supreme Court allows generic sales of its pricey rare disease drug

    The decision is a victory for patient advocates aiming to increase access to cheaper treatments for SMA. Read more

    Stat - Oct 19
    Rani Teams Up With Chugai To Revolutionize Oral Drug Delivery For Rare Diseases
    Rani Teams Up With Chugai To Revolutionize Oral Drug Delivery For Rare Diseases

    Rani Therapeutics Holdings, Inc. (NASDAQ:RANI) stock surged Friday after unveiling two major announcements: a licensing collaboration with Chugai Pharmaceutical Co., Ltd., and a $60.3 million private placement financing led by Samsara BioCapital.The twin developments mark a significant boost to t... Read more

    Benzinga - Oct 17
    STAT+: Novo strikes $2.1 billion deal with Omeros for rare disease drug
    STAT+: Novo strikes $2.1 billion deal with Omeros for rare disease drug

    And other biotech news updates, brought to you by The Readout. Read more

    Stat - Oct 16
    Man with rare disease told at 18 he'd have to wait 22 years for hip replacement
    Man with rare disease told at 18 he'd have to wait 22 years for hip replacement

    Jack Brennan, from Dublin, was told he was too young for a double hip replacement at just 18 after spending years in immense pain - but he finally got the surgery five years later Read more

    Mirror - Oct 15
    Mystery over rare disease in 1 corner of UK that has no known cure or treatment
    Mystery over rare disease in 1 corner of UK that has no known cure or treatment

    A cluster of patients has been identified in one part of the UK. Read more

    Express - Sep 22

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    New York Post - Dec 28
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