Our Next Chapter: Metabolic Support
OurorganisationwasfoundedintheUKafterJenniferGreenewasbornin1978withtherare inheritedmetabolicdisorder(IMD),Cystinosis.Findinglittleinformationorsupportforfamilies affectedbymetabolicconditions,herparents,PeterandLesleyGreene,establishedthecharityin 1981,originallynamedtheResearchTrustforMetabolicDiseasesinChildren(RTMDC),toprovide support,raiseawarenessanddriveresearchforinheritedmetabolicdisorders Wehavealways beenasmallorganisationwithbigimpact;ourfounderswereinstrumentalintheestablishment ofEURORDIS,thelargestpatient-drivenallianceofrarediseasepatientorganisationsinEurope andhelpedputrarediseasemorefirmlyontheradaroftheUKhealthcaresystem.
Wehaveover45yearsofhistorysupportingindividualsandfamiliesaffectedbyinherited metabolicdisordersandhavegrownfromasmall,family-driveninitiativeintoanationallyand internationallyrecognisedrarediseasecharity.Overtheyears,wehaveexpandedourservicesto supportpeoplelivingwithhundredsofraremetabolicconditionsworldwidebutretainedour closeconnectionstoourcommunity.Wedevelopedcoreservicessuchasadviceandsupport, buildingcommunities,peersupport,educationalresourcesandadvocacyinitiatives,alongside partnershipsandpolicyengagementthathavestrengthenedthevoiceoftheraredisease community Personalstoriesfromindividualsandfamiliesarecentralindrivingourworkandour impactandwehavealwaysbeenanauthenticallypatient-centricorganisationwhilststrivingfor growth.OurnameandremithavehistoricallyfocusedonourrelevanceandstrengthasaUKbasedorganisationsupportingUKcommunitiesandhaveforthepastsevenyearsbeencalled MetabolicSupportUK
The next steps
Wehaveevolvedandnowofferdiverseservices,supportandadvocacyacrossour impressiverangeofwork.Overthecourseofaweek,wecanbefound:respondingto governmentpolicyconsultations,hostingcommunityquiz,advocatingforsocialcare support,providingsector-leadingconsultancywithcommercialpartnersandhelping connectcommunitiesacrosstheglobe.Buildingonthisrich,community-builtlegacy, ourworkandreachhavegrownbeyondtheUK Asourcommunityhasexpanded internationally,itisimportantthatournamereflectstheglobalnatureofthesupport weprovideandresearchwedo,ensuringourdoorsareopenforthe1.43millionpeople livingwithIMDsworldwide.ThatiswhythisRareDiseaseDay2026weareproudto sharewearechangingournamefromMetabolicSupportUKtoMetabolicSupport.This isanevidence-drivenevolutiondesignedtobetterreflectwhatwealreadydoandto helpmorepeoplefindandreachus.
Whilstweremainfullycommittedtosupportingfamiliesandhealthcareprofessionals intheUK,ourworknowalsoreachescommunities,sharesresources,andsupports collaborationacrossborders WecanandwillhelpeveryonelivingwithanIMDtolive welltoday,tomorrowandbeyond.Aswegrowinternationally,weremaincommittedto ensuringeveryindividualwithanIMDhasaccesstothesupportandresourcesthey need,wherevertheylive.Ournewname,MetabolicSupport,reflectsthisambitionwhile keepingourUKcommunityattheheartofeverythingwedo
Our global community
MetabolicSupportisalreadyworkingtosupportourglobalcommunity:
InternationalEnquiries:From2024-2025,wereceived152internationalenquiries from47countries,equatingto23%ofallenquiriesintheyear,a58%increasefrom 2023-2024
WebsiteInsights:In2025,40%ofthe90,000annualwebsiteuserswerefromoutside oftheUKwithvisitorsfrom187countrieswithtopcountriesrangingfromtheUSA andCanadatoIndia,TurkeyandBrazil.
ThinkAmmoniacampaign:Ourfirstinternationalcampaign;sharedacrossnine countrieswithhealthcareprofessionaleducationwebinarsdeliveredin:Ukraine, Pakistan,Peruandforover187EuropeanhealthcareprofessionalswithMetabERN. Wehaveco-createdtherarediseasecurriculuminPeruandPakistantoinclude hyperammonaemiatraining, MetabolicSupportSriLanka(MSSL): InMarch2026,welaunchourfirst internationalpatientgroupbranch.
HPPUnited:IncollaborationwithSoftBonesUSwearetheleadpartnerinan internationalcohortofpatientgroupsforpeoplelivingwithHPP
ISNS–InternationalNewbornScreeningGroup:CollaboratingwiththeCDC,WHO, andglobalexpertstosharelearningsandimprovenewbornscreening,helpinglowandmiddle-incomecountriesachieveearlierandmoreaccuratediagnoses.
EURORDIS–Pan-EuropeanRareDiseaseOrganisation:Membersandco-founders. ThreestaffcompletedtheEURORDISOpenAcademytraining,wesitontheSocial PolicyActionGroup.
Internationalconferences:Sharingourinsightsinperson,includingaposterat WorldOrphanDrugCongress(Barcelona)andrunningsessionsatSSIEM(Portugal) andICIEM(Japan),influencingcareandpracticeglobally.