TheNGOCommittee
forRareDiseases
attheUnitedNations,NewYork
RDIAnnualMeeting,Edinburgh
25May2016
ACommitteeofCoNGO
1
NGOCommitteeforRareDiseases,
UN,NY
Updateon
the
Committee
Whythe
United
Nations?
Nextsteps
2
RDI
members’
role
Q&A
NGOSubstantiveCommitteeforRare
Diseases
Amulti-stakeholder,inclusive,globalecosystem
centeredaroundtheissueofrarediseases:
*  Toincreasevisibilityofrarediseasesatthegloballevel
*  ToconnectNGOsinterestedinrarediseasesandtheir
partnersthroughaglobalplatform
*  Toelevaterarediseasesasaglobalpublichealthpriority
*  Tofightdiscriminationagainstpeoplelivingwithrare
diseasesworldwide
3
NGOSubstantiveCommitteeforRare
DiseasesattheUnitedNations,NY
‘BringingNGO
expertiseto
theUN’
NGOSubstantiveCommitteeon
ageing,mentalhealth,sustainable
development,spirituality,migration,
education…
NGOSubstantive
CommitteeforRare
Diseases
4
NGOSubstantiveCommitteeonthe
StatusoftheWomen,theFamily,
Narcotics,Indigenous
Communities…
IntroducingtheCommittee:
CompositionandMembers
Regular
Members
NGOsin
consultativestatus
withotherUN
bodiesthan
ECOSOC(e.g.
WHO,DPI,etc)
Allfor-profit
undertakings,e.g.
privatesector
organisations
Associate
Members
NGOsinconsultativestatus
withECOSOC
Observer
Members
Supporter
Members
Individual
Members
5
AllotherNGOs,
governments,patient
groups,academic
institutionsorcivil
societyorganisations/
Non-profitonly
Peopleactivelyworkingfor
thebenefitofpeopleliving
withrarediseases,orwith
anotedpoliticalor
academicexpertiseonrare
diseases
TheCommitteeexists!
October2015
Accepted
asaCoNGO
Committee
March2016
By-laws
approvedby
CoNGO
president
April2016
Establishing
contacts
withinUN
and
member
states
6
November2016
Inaugural
meeting
WhyaretheUnitedNations
therightplatformforaction?
Therightplace…
Asadriverofastrong
publichealthagenda,
ofdevelopmentsin
scienceandofhuman
rightsforall.
7
WhyaretheUnitedNations
therightplatformforaction?
…attherighttime.
InNovembertheUNadoptedits2030Agendafor
SustainableDevelopment,includingtheadoptionofthe
17SustainableDevelopmentGoals(SDGs).
ThereisaclearalignmentofanumberofgoalswithRD:
8
Development
Disability
Social
inclusion
Science
Social
services
Innovation
NGO
Committee
forRare
Diseases
Accessibility
Universal
Health
Coverage
Gender
Accessto
medicines
9
Children
ProposedObjectivesandActivities
*  Collect,shareanddisseminateup-to-dateinformationandresearch
ontheglobaldimensionsofrarediseasesfromaholisticpointof
viewintheUN
*  ForexamplethroughStateoftheArtandthematicreports
*  Raisetheprofileofpeoplelivingwithrarediseasesworldwide,
*  Particularlythroughdedicatedevents(e.g.conferences,workshops,etc)
*  Callforandsupporttherecognitionofrarediseasesasapriorityin
theareasofpublichealth,research,medicalcare,socialcareand
integration,bothattheinternationalandnationallevels
*  Toseerarediseasesmorerecognisedandembeddedacrossalllevelsofthe
UN’sworkandtheUNsystem,suchasinreportsandresolutions
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Theroadahead:nextsteps
*  ContinuetobuildtheCommittee
*  ContinuetolobbyatUNlevelandwithUN
memberstatesforsupport
*  Preparationsfortheinauguralmeetingin
November
11
WheredoRDImembersstand?
*  RDImemberswillbeautomaticallyrepresentedthroughRDI
*  RDIwillserveastheprimaryorganrepresentingallpatients
acrossalldiseasesandallcountrieswithintheCommittee
*  ThisfallsunderRDI’sobjectivetotoadvocateforrarediseases
asaninternationalpublichealthpriority
*  RDIwillconsultwithmemberstoensuremembers’positions
aretakenforwardwhereappropriate
*  Therewillbescopeformemberstoparticipatedirectlyin
theircapacityasRDImembers
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HowelsecanRDImembers
contribute?
* Lobbyingyournationalauthoritiesto
securetheirsupport:
*  Fortheinauguralmeeting8November2016
*  MovingforwardwiththeCommittee
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Thankyou!
Anyquestions?
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