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Indian-origin woman, 2 sons suffer from rare skeletal disorder that contorts bones

It took over three decades to unravel the mystery – a 2010 diagnosis revealed Jansen s, a disorder caused by a gene mutation that distorts bone growth.

United arab emiratesUnited statesAdam timmNeena nizarJansen foundationAmerican adam timmJansens syndromeGenetic anomalyJansens metaphyseal chondrodysplasia

This Nebraska Mom and Her Two Sons Have One of the Rarest Diseases in the World: Pain Is Part of Our Every Day (Exclusive)

This Nebraska Mom and Her Two Sons Have One of the Rarest Diseases in the World: Pain Is Part of Our Every Day (Exclusive)
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United statesCity ofUnited kingdomUnited arab emiratesNeena nizarAdam timmHarald jueppnerJansen foundationMassachusetts general hospital

WebMD Health Heroes: Neena Nizar

Meta/User Description A tireless search for her own diagnosis and her sons pushed her to create The Jansen s Foundation, an organization that brings awareness, research funds, and hope for a cure to this rare and debilitating skeletal condition.

United statesHarald jueppnerClinical research organisationJansen foundationHarvard medical schoolNational institutes of healthMassachusetts general hospitalHarvard medicalAlthough jueppnerRare disease dayNational institutesResearch organisationWebmd magazineHealth heroesWebmd health heroesNeena nizar

WebMD Announces 16th Annual 2023 Health Heroes

WebMD Announces 16th Annual 2023 Health Heroes
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United statesNeena nizarPrnewswire webJosh sommersufferedJohn whyteHaydar frangoulHannah davisMichaelj kelleyChordoma foundationVitals consumer servicesDuke cancer instituteWorld health organizationWellness networkNational institutes of healthDuke universityAptus health

Phoenix Children s Expands Pediatric Orthopedic Surgery Team with Hire of Globally Renowned Brittle Bone Expert

As Phoenix Children's continues to prioritize clinical excellence and translational research with the hope of advancing new treatments for devastating childhood illnesses, the health system has added another internationally renowned surgeon-scientist to its medical staff. Maegen Wallace, MD, MBA, a pediatric orthopedic surgeon and expert in osteogenesis imperfecta, or brittle bone disease, joined the Herbert J. Louis Center for Orthopedics and Sports Medicine at Phoenix Children's last month.

United statesUniversity of nebraska medical centerHerbertj louisPam smithMatthew halanskiHerbertj louis centerMineral researchChild health research instituteNational institutes of healthPhoenix children care networkJansen foundationSaint louis universityUniversity of nebraska lincolnPamerican society for boneMaster of business administrationBrittle bone disorders consortium