Metabolic Support UK is a charity registered in England and Wales (1089588) in Scotland (SCO44634) and a Company Limited by Guarantee (04267454).
Background
Thiscollaborationstartedwithconnection;attheBIMDG AnnualSymposiuminLondon,MetabolicSupportmetDr ImalkeKankananarachchi(ConsultantPaediatricianand SeniorLecturer,UniversityofRuhuna)whosharedthe significantunmetneedinSriLanka,wheretheabsenceof establishedmetabolicservicesresultsinreducedqualityof lifeandshortenedlifeexpectancyforpeoplelivingwith inheritedmetabolicdisorders(IMDs)andsharedhis ambitiontoestablishin-countryservices
Followinguponthissharedconcernweestablishedan ongoingrelationship,andin2024collaboratedonafunding applicationtoUKRI(UKResearchandInnovation)forapilotexpandednewborn screeningprojectinSriLanka.Althoughnotfundedinthisround,theprocess demonstratednationalfeasibilityandhighlightedtheneedforparallelfamilysupport structure,sodiscussionsbeganarounddevelopinganationalpatientgroup
WehavecontinuedorrelationshipwithSriLankainthefollowingways:
RareDiseaseRegistry:Wehavesupportedthedevelopmentofanationalrare diseaseregistryinSriLanka,initiatedbytheInternationalGaucherAlliance,A RareCauseandSymetryML Wecontinuetocontributethroughengagement andplatformfeedbacktoensuretheregistryproducesmeaningfuldatato informserviceplanningandstrengthennationaladvocacy.
ThinkAmmonia:SriLankahavedeliveredourThinkAmmoniacampaignincountrywithmaterialstranslatedandsharedlocally,adedicatedwebsitehub wascreated,andammoniaanalysersweresecured.Thisworkledtothe positiveidentificationofhyperammonaemiaandimprovedoutcomesfor multiplepatients
PatientSupportGroup:Wehavetakenthedecisiontoestablish ‘MetabolicSupportSriLanka’,atwo-yearcollaborationdesignedto provideinternationalknowledgeandskillssharingwiththeaimbeing aself-fundednationalorganisationasabranchofMetabolicSupport.
Working Together Across Borders: Why
Our Partnership with Sri Lanka Matters
AtMetabolicSupport,weknowthatpeoplelivingwith InheritedMetabolicDisorders(IMDs)facechallengesacross theglobe,butsadlysupportisnotalwaysavailable.That’s whyweareexpandingourglobalworkandstartingwitha meaningfulpartnershipinSriLanka,acountrywherethe needforIMDadvocacy,awareness,andsupportisclear andwherewehaveestablishedconnections
SriLankaishometo23millionpeople,withmostfamilies livinginruralcommunities.Althoughthehealthcaresystem isfundedandaccessedinasimilarwaytotheNHS–thesupport structuresaroundrarediseasesandIMDsarestillinearly development.Ratherthanseeingthisasabarrier,weseeitasanopportunityto workalongsidelocalexpertsandfamiliestobuildsomethingmeaningfulfromthe groundup.Itisachancetolearn,toshare,andtogrowtogether.
Globalcollaborationbenefitseveryone TheIMDcommunityinSriLankawillgainclearer informationandstrongersupport,whileUKcommunitieslearnfromtheinnovationand insightthatcomefromdevelopingIMDcareinadifferentcontext.Ithelpsusunderstand howtodelivercareinruralsettings,buildawarenessfromscratch,andconnectclinicians andfamiliesinpracticalways,strengtheningourworkathome.Byraisingglobal awarenessofmetabolicconditions,wealsoincreaseopportunitiesforresearch, investment,andcollaboration StrengtheningoneIMDcommunitystrengthensusall No oneshouldfaceanIMDalone.StandingalongsideSriLankaisasteptowardsaworld whereeveryfamily,everywhere,hasaccesstothecare,information,andsupportthey needtolivewelltoday,tomorrow,andbeyond.
metabolic support sri lanka
MetabolicSupportSriLanka(MSSL)
isacollaborativeinitiativebetween MetabolicSupportandtheRareDiseaseForumofSriLanka(RDF) TheRDFare theprimarybodyforrarediseaseadvocacy,awarenessandcareandoperate undertheSriLankaCollegeofPaediatricians.Weareworkingtostrengthencare, diagnosis,andsupportforindividualslivingwithIMDsacrossthecountry;bringing togetherinternationalexperienceandlocalclinicalexpertisetoaddressthe growingneedforcoordinatedsupport,improvedaccesstodiagnostictesting, andgreaterawarenessofmetabolicdisordersinSriLanka Throughshared knowledge,training,andadvocacy,MSSLaimstoempowerfamilies,build capacitywithinthehealthsystem,andcontributetothedevelopmentofclearer pathwaysfordiagnosisandcare.
metabolic support
sri lanka: aims
Raisingpublicandprofessional awarenessofIMDs
Supportingtheenhancementofdiagnostic servicesandlaboratorycapacity
Improvingcoordinationbetweenclinicians, hospitals,andsupportservices
Strengtheninglinkswithglobalmetabolic networksandresearchgroups
Providinginformation,guidance,and peersupportforfamilies
Contributingtothedevelopmentofnational policyandcarepathwaysforrarediseases
metabolic support sri lanka: inauguration
TheinaugurationofMetabolicSupportSriLankatookplaceatLadyRidgeway Hospital,Colombo,onthe4thMarch2026bringingtogetherawiderangeof stakeholdersincludingseniorrepresentativesfromtheMinistryofHealth,theWorld H in si liv
WelcomeAddress–Prof.RuwanthiPerera
Theeventopenedwithawelcomeaddresshighlightingthe decade-longjourneyoftheRareDiseaseForuminSriLanka andthecollaborativeeffortsthatledtotheestablishment ofMetabolicSupportSriLanka.Thespeakeremphasisedthe significantemotional,financial,anddiagnosticchallenges facedbyfamiliesandunderscoredtheimportanceof collectiveactionandpartnershipstosupportthem.
Address–Prof.PujithaWickramasinghe(President,SLCP)
Prof.Wickramasinghestressedthatrarediseases,though individuallyuncommon,affectaconsiderablenumberof childrencollectively.Hehighlightedprogressinareassuchas newbornscreening,whilecallingforimprovedinfrastructure, regionaldiagnosticcentres,andpolicydevelopment Healso emphasisedtheneedfornationalguidelinesandstronger collaborationbetweenacademia,government,and internationalpartners.
CurrentSituationofIMDs–Dr.ImalkeKankanarachchi
Thispresentationprovidedacomprehensiveoverviewofthe currentlandscapeinSriLanka.Keychallengesincludelimited diagnosticfacilities,highcostsofgenetictesting,lackof accesstoessentialmedicationsandspecialiseddiets,and absenceofreliablenationaldata Despitemanyconditions beingtreatable,gapsininfrastructureandpolicyhinder effectivemanagement.Thespeakerproposeddevelopinga nationalrarediseasepolicy,improvinglaboratorycapacity, andprioritisingaccesstolow-costtreatments
PatientPerspective–MasterJayakumarAdesh
Apowerfulandemotionalhighlightoftheeventwasthe testimonyofayoungpatientlivingwithmucopolysaccharidosis (MPS).Hesharedhispersonaljourney,includingchallenges accessingtreatmentlocallyandrelianceoninternationalcare. Hisappealforsustainedsupportbeyondshort-termfunding underscoredthereal-lifeimpactofpolicyandhealthcaregaps
WHOAddress–Dr.RajeshPandav
DrPandavframedrarediseasesasanissueofhealthequity andhighlightedtheirrecognitionasaglobalhealthpriority.He outlinedkeyareasforaction,includingearlydiagnosis, improvedcarepathways,betterdatasystems,andfinancial protectionforfamilies Healsoemphasisedtheimportanceof patientsupportgroupsinstrengtheninghealthsystemsand ensuringpatient-centredcare.
GovernmentAddress–DeputyMinisterofHealth, Dr.HansakaWijemuni
TheDeputyMinisterreaffirmedthegovernment’scommitment toimprovingchildhealthandacknowledgedthatrarediseases havenotyetreceivedsufficientpriority.Heexpressedsupport forongoingcollaborationwithcliniciansandstakeholdersto enhancecareandpolicydevelopmentforaffectedchildren
IntroductiontoMetabolicSupportSriLanka–
KirstyHoyle(CEO,MetabolicSupport)
Ms.Hoyleoutlinedtheoriginsoftheinitiative,highlighting internationalcollaborationandsharedlearningbetweenthe UKandSriLanka Shedescribedkeyfocusareasincluding newbornscreening,patientsupport,awarenesscampaigns, andcommunitybuilding.Theimportanceofsustained partnershipsandempoweringlocalleadershipwas emphasised.
WebsiteLaunch–JonathanGibson(Campaigns& CommunicationsLead,MetabolicSupport)
TheMetabolicSupportSriLankawebsitewasofficially launchedduringtheeventanddemonstratedliveto attendees.Theplatformwaspresentedasacentral resourceforfamiliesandhealthcareprofessionals,offering information,guidance,andopportunitiesforcommunity engagement,aswellassupportingfuturedevelopment throughdatacollectionandcollaboration
AccesstoMedications–Dr.DedunuDias
Dr.Diasaddressedthecomplexitiesofensuringac medicinesanddiagnosticswithinexistingregulato procurementsystems Hehighlightedtheneedfor policyapproaches,improveddata,flexibleregulat pathwaysfororphandrugs,andbettercoordinatio internationalpartnersanddonors.
Conclusion
Theinaugurationconcludedwithavoteofthanks, recognisingthecontributionsofnationaland internationalpartners,clinicians,andfamilies.Theevent markedthebeginningofacoordinatednationaleffortto improvethelivesofchildrenwithinheritedmetabolic disordersinSriLanka.
lanka: next steps
TheinaugurationwasjustthebeginningofMetabolicSupportSriLanka Movingforward, wewillutiliseinsightsgatheredthroughasurveyoftheSriLankanIMDcommunitywhich received41responsestoplotoutnextstepsfortheinitiative,enablingprogresstowards theachievementoftheorganisation’saims.
Specifically,activitieswillfocuson:
Eachoftheseareaswillensureaself-sustainingorganisation,ledbyin-country experts,upskilledthroughoutourinvolvementtoensuretheSriLankanIMD communityareabletolivewelltoday,tomorrowandbeyond.
Interestedingettinginvolvedorlearningmore?
Getintouchviatheemailaddressbelow: jonathan@metabolicsupport.org
Metabolic Support UK is a charity registered in England and Wales (1089588) in Scotland (SCO44634) and a Company Limited by Guarantee (04267454).