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The information and materials accessed through or made available for use on any of our Sites, including, any information about diseases, conditions, treatments, or medicines, are for informational purposes only. The Content is not intended to be and is not a substitute for professional medical advice, diagnosis, or treatment, and your participation on our Sites does not create a healthcare professional-patient relationship. You should consult a doctor or other qualified health care professional regarding any questions you have about your health or before making any decisions related to your health or wellness. Call your doctor or 911 immediately if you think you may have a medical emergency.message sent
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How One Mother Turned Her Son’s Rare Disease Diagnosis Into an Opportunity to Help Others
Moira Taffarello and her husband have experienced what no parent hopes to: their child being diagnosed with a rare disease. Speaking with Moira, she said, “Ever since my son Dennis’ birth, I felt something was off. He often had ear infections, regularly fell ill and cried more than most young children.
Experts ignored our concerns for a long time, saying that I was just overprotective. But I followed my intuition, and when Dennis was two years and three months old, he was diagnosed with Hunter Syndrome.”
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news & meetingsTakeda to Commercialize Next-Generation Hunter Syndrome Therapy Through Collaboration With JCR PharmaceuticalsTakeda Pharmaceutical Company Limited an...
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educationReal World Long-Term Outcomes in Patients With Mucopolysaccharidosis Type II: A Retrospective Cohort StudyWe investigated the decline of activitie...
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Community CenterRARE Scholars: Empowering Students Living With Rare DiseaseApplications open each year on Rare Dise...
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