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ALAN: 669 Individuals & Families with Rare Diseases Supported in 2023

ALAN: 669 Individuals & Families with Rare Diseases Supported in 2023
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National rare disease planEuropean commissionField of mental healthRares luxembourgNational rare diseasePromising practice

30k People Affected by Rare Diseases in Luxembourg

30k People Affected by Rare Diseases in Luxembourg
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Martine deprezMinistry of healthInternational rare disease dayNational rare disease allianceLuxembourg ministry of healthLuxembourg hospital centreNational rare disease planSocial securityGrand duchyRares luxembourgRare diseases infolineNational rare diseaseBan de gasperichMinister deprezMaladies rares luxembourg

New patient forum to assist in the development of new Rare Disease Strategy

New patient forum to assist in the development of new Rare Disease Strategy
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Breda smythVicky mcgrathDerick mitchellStephen donnellyProgramme for governmentPatient forumSteering groupNational rare disease planRare diseaseRare diseases irelandIrish platformPatient organisationsMedical officerProfessor breda smyth

Establishment of National Rare Disease Steering Group

Establishment of National Rare Disease Steering Group
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Republic of irelandCecily kelleherBreda smythNational rare disease steering groupHealth service executiveHealth stephen donnellyNursing homes expert panelPublic health medicine epidemiologyEuropean reference networksRare disease steering groupDepartment of healthIreland traveller health studyNational rare diseasePublic health reform expert advisory groupPatient forumNational rare disease plan

No sign of new rare disease plan despite four year wait

Though listed as a priority for government, the plan has yet to emerge

Vicky mcgrathNational rare diseaseOireachtas healthNational rare disease planHealth research boardIrish pharmaceutical healthcare associationRare diseases ireland