Register here for "Doing better where it counts: Bringing rare disease care to underserved populations" by Science/AAAS

G2MC members are invited to join Science/AAAS’s all virtual “Doing better where it counts: Bringing rare disease care to underserved populations.”

This Webinar hopes to highlight the following:

  • Obstacles encountered during the diagnostic odyssey for patients with rare disease
  • Outline the hardships faced specifically by underserved populations based on factors like geography, access to care, and systemic racism
  • Discuss new technology-based solutions and other opportunities to address and alleviate some of these hardships

Overview

The plight of patients with rare diseases is a critical, unmet need in global health care. The statistics are frightening: There are over 8,000 rare diseases in the world that affect 350 million people. Only half of rare disease patients ever receive an accurate diagnosis, and one in four patients with a rare disease waits over 4 years for an accurate diagnosis. There is an urgent need to better understand the barriers to shortening this diagnostic odyssey.

Diagnosing and treating rare diseases often necessitates highly specialized medical teams, high-tech diagnostic equipment, and uncommon, expensive therapies. Lack of access to health care for patients with rare diseases is yet another barrier to diagnosis. Consider the fate of a child born with a rare or ultrarare disease in sub-Saharan Africa or an underserved Native American population. Setting aside the social and financial barriers to fulfilling basic needs, it is highly likely that they have negligible access to dedicated rare disease health care teams.

However, we are on the brink of new solutions that include accessing specialized care through telemedicine, diagnosis through mail-in specimens, and computer-aided remote phenotyping. This webinar discusses how new systems and technologies can close the chasm that prohibits those with rare diseases living in underserved countries and communities from getting critically needed care.

The Webinar will take place Thursday, August 18th at Noon EST.

LastFirstCountry
A Pardo VRosaChile
AbaanOganUnited States of America
AbadingoMichPhilippines
AbdelhakamDinaEgypt
AbdufulzomorodaIsrael
AbramowiczMarcSwitzerland
AdduculRufusPhilippines
AirikkalaElisaFinland
AkkenaRajeshIndia
Al-MullaFahdKuwait
AlabanAvivPhilippines
AlawarOmaymaUnited States of America
Alejandra Chavez SantoscoyR.Mexico
AliBassamUnited Arab Emirates
AliSuadMalaysia
AlvaradoVeraGuatemala
AlvarezCarolinaChile
Aly SangareMoussaMali
Andres Maureira CaviedesIgnacioChile
Ann AbacanMaryPhilippines
AnuradhaRajithaUnited States of America
AraosRafaelChile
AravenaTeresaChile
ArmisenRicardoChile
Ávila JaqueDianaChile
BabaiArwaUnited Kingdom
BabuMohanFinland
BaezPabloChile
BahcallOrliUnited States of America
Barlow-StewartKrisAustralia
barraza. ChileximenaChile
BelcherAndreaAustralia
BelcherAndreaAustralia
BertierGabrielleUnited States of America
BezuidenhoutHeidreSwitzerland
BlondelCarlosChile
Bon MacedaEbnerPhilippines
BrownCarlUnited States of America
BrugnolloAntonioBrazil
BryantNicUnited States of America
Buleje SonoJose LuisPeru
BustamanteEvaChile
CalaloCheryllPhilippines
CalzoneKathyUnited States of America
Cárdenas MuñozMatías Franklin Darío AlejandroChile
Carlos RubilarJuanChile
CarmonaPinkyPhilippines
CarrascoJavieraChile
CarvalloPilarChile
CastilloSilviaChile
CastilloValentinaChile
Cecilia PoliMariaChile
CerecedaKarinaChile
CherelStanBrazil
ChinonyeMaduagwunaNigeria
ChuYoyoHong Kong, China
CofréGlendaChile
CongXiaomeiUnited States of America
Coronado CavazosAydeéMexico
CortésBernalCosta Rica
CourtneyRobUnited States of America
CremonaLauraUnited States of America
DajoyagKevinaPhilippines
Danasabe JobbiYusufNigeria
DaniasKonstantinosGreece
Dawn MoralesKristinePhilippines
DíazCatherineChile
DickeySusanUnited States of America
DinatorJavieraChile
DissanayakeVajiraSri Lanka
Dominguez ValentinMevNorway
DowneyReneeUnited States of America
DunneEvanUnited States of America
Duran MojicaAnyeloChile
DwyerAndrewUnited States of America
E. López ParraJosefaSpain
EastKellyUnited States of America
Eduardo Hodar QuirogaChristianChile
El KamahGhadaEgypt
EncinaGonzaloChile
EricesAlejandroChile
Erika OrtezaMaryUnited States of America
EspinosayolandaChile
EsquivelBernardCanada
FadistaJoaoDenmark
FakhroKhalidQatar
FanarasVasileiosGreece
FanerMonettePhilippines
FasayeGraceUnited States of America
FebboPhilUnited States of America
FelicianoJazminePhilippines
FernandezMarioChile
FerreccioCatterinaChile
FieggenKarenSouth Africa
FindleyLaurieUnited States of America
FlorenciaMariaChile
Flores BjurströmCarmenSweden
FourniesHernanChile
From Sri LankaKamalathasanSri Lanka
FuentesIgnaciaChile
FuentesNoeliaArgentina
GahlWilliamUnited States of America
Garcia-BlojBenjaminChile
Garcia-HuidobroJenaroChile
Garrett-MeadNancyUnited States of America
GeyskensLilianeBelgium
GinsburgGeoffUnited States of America
GolfoGelliePhilippines
Gonzaga-JaureguiClaudiaUnited States of America
GonzalezEvelinChile
GonzálezIsabelChile
GoodhandPeterCanada
GriffinKatieAustralia
GronichNaomiIsrael
GuerraMarielaGuatemala
GutierrezMercedesMexico
GuzzardoPalomaUnited States of America
Guzzardo (US)PalomaUnited States of America
HammarAnne-MarjaFinland
HaspekRichUnited States of America
HernandezCarlosChile
HettiarachchiDineshaniSri Lanka
HobbsErnieUnited States of America
HowingtonLynnetteUnited States of America
HubbardTimUnited Kingdom
HungMing WaiHong Kong
HusermanJonathanChile
IglesiasDianaCanada
ImhofSaraUnited States of America
J. MorelliMarcoItaly
Jaldin CrespoLimbergChile
JenningsBarbaraUnited Kingdom
Jenny Marcelain CubillosKatherineChile
Jesús ZavalaMaríaChile
José CardonaJuanGuatemala
KachambwaPaidamoyoSouth Africa
KariofylliskaramperisGreece
KatsilaTheodoraGreece
KechagiaKonstantinaGreece
KennelHannahUnited States of America
KennyEimearUnited States of America
KesserwanChimeneUnited States of America
KhantAyekyawtMyanmar
KleinAndresChile
KocerAlissaUnited States of America
KolambageYasasSri Lanka
KorfBruceUnited States of America
KoslowAlanUnited States of America
KoufakiMargiannaGreece
KraiserTatianaChile
KumuthiniJuditSouth Africa
kunsokMalaysia
KutsunugiSaekoJapan
KyriakopoulouChristinaBelgium
LaaksonenMariFinland
LagosMarcelaChile
LandsmannPatriciaUnited States of America
LarrandaburuMarielaUruguay
LarrandaburuMarielaUruguay
Lay-SonGuillermoChile
LebensohnAlexandraUnited States of America
LeeJulianaMalaysia
LiDongUnited States of America
LiRonglingUnited States of America
LimLee-LingHong Kong, China
ListyasariNurinIndonesia
LiuYiUnited States of America
LizamaDomingoChile
LLamos PanequeArianneEcuador
LopezCatalinaColombia
LópezSergioChile
Lopez StarBethaniaMexico
Madrid CastilloAngelaPeru
Mae AvilaChristinePhilippines
Magbanua-CalaloChePhilippines
MaharjanKrishnaNepal
MaigaAl Hassan dit BaneyeMali
MakedonskaJanaBulgaria
MakridakisNickUnited States of America
MalopeMaleboSouth Africa
ManolioTeriUnited States of America
Maracaja CoutinhoViniciusBrazil
Marcelo Esquivel RomeroGustavoMexico
MargaritSoniaChile
Maria BuzalehAnaArgentina
Maria Martin ChileLuzChile
MarínMartaSpain
MartinFernandaChile
MartinRaineUnited States of America
MartinelliVivianeBrazil
MartínezMatíasChile
MatthijsGertBelgium
MaureiraIgnacioChile
Mawuli AdadeySamuelSouth Africa
MelitoVivianaArgentina
MelladoCeciliaChile
MeloCamilaChile
MendesGuilUnited States of America
MendezRodrigoArgentina
MerchantArshiyaUnited Kingdom
MerencillaRoxannePhilippines
MessersmithDonnaUnited States of America
MetspaluAndresEstonia
milleredwardUnited Kingdom
MishraRupeshNepal
MitropoulouChristinaGreece
MKThongUnited States of America
MogakaJohnBotswana
MooreHilaryUnited States of America
MulderNickySouth Africa
MunizTatianeBrazil
naparstekyaakovIsrael
NdadzaArinaoSouth Africa
NisselleAmyAustralia
NoordeenNafeesaSri Lanka
ObispoDaisyPeru
OchoaAnne SharmainePhilippines
OlguinValeriaChile
OlivaresGonzaloChile
Olugbemiro NafiuMikhailUnited States of America
OluwoleFemiSouth Africa
OnebunneEzinneNigeria
OngWinnieMalaysia
OrellanaVivianaChile
OrtegaVictoriaChile
OsorioClaudiaGuatemala
Pablo AlcayagaJuanChile
PadeniyaPadmapaniSri Lanka
PagnottaPriscilaArgentina
PareraVictoriaArgentina
PathiranaSajeewaniSri Lanka
Pati BhandariKailashIndia
Patricio MirandaJoseChile
Patricio Miranda - ChileJoseChile
PatrinosGeorgeGreece
PenangGaik SiewMalaysia
PereiraLygiaBrazil
PérezEduardoUnited States of America
PérezElisaChile
PilankarAsawariGermany
PollinToniUnited States of America
PopovicMilanBelgium
PosadaMarioUnited States of America
PrichepElissaUnited States of America
PriyawanshaThusharaSri Lanka
Puthen VeettilJitheshQatar
QuezadaMauricioChile
Quispe BravoBernardo EstebanPeru
RacomaMJPhilippines
Rakhra-BurrisTejinderUnited States of America
RamírezOrlandoChile
RasmussenSusanaChile
Rebolledo-JaramilloBorisChile
ReeseMartinUnited States of America
ReichardtJuergenAustralia
RellingMaryUnited States of America
RennertGadiIsrael
renniemelissaUnited States of America
RepettoGabrielaChile
RicherEtienneCanada
RivadaviaFernandoUnited States of America
RivasChrisEcuador
RivasSolangeChile
RobertsBenUnited States of America
RodriguezEstherSpain
RodriguezLauraUnited States of America
RodríguezCeciliaChile
RojasMarceloChile
SadeghpourAzitaUnited States of America
SalasSantiagoUnited States of America
San MartinEstebanChile
SandersNekeaUnited States of America
SayPabloUnited States of America
SchäferCarolinaChile
SchullySheriUnited States of America
ScottMeganSouth Africa
Sebastian MartinezHugoChile
ShiaoPamUnited States of America
ShibliRanaIsrael
ShuldinerAlanUnited States of America
SifaquiSofiaChile
SimoesVagnerBrazil
SinclairAndrewAustralia
SirisenaNirmalaSri Lanka
SismanoglouDespoinaGreece
smolowitzJaniceUnited States of America
SolisErnestoChile
SoorianarayananTharisiniMalaysia
SoorianarayananTharisiniMalaysia
Spring-PearsonCynthiaUnited States of America
SubasingheVindyaSri Lanka
SwaminathanSoumyaSwitzerland
ThundersMichelleNew Zealand
TiongSyMalaysia
Titus NgenoG.United States of America
TokutomiTomoharuJapan
ToledoKarenChile
ToroJessicaChile
ToweryMeredithUnited States of America
Tri Nugroho SupranotoYehudaIndonesia
TumanengRozelPhilippines
TumulakMa-AmPhilippines
TurraFelipeUnited States of America
Twumasi AboagyeElvisGhana
VahtMariliisEstonia
ValezJenniferColombia
VarelaLauraArgentina
VerdugoRicardoChile
Victoria Layson-LisingNadinePhilippines
Vila PerezMarianaArgentina
VillalbaCristalBrazil
VillarroelDanielaChile
VillarroelFranzChile
VinascoEdnaGuatemala
VossJoachimUnited States of America
VrentzouMarinikyGreece
WallingJenniferUnited States of America
WanChenCanada
WasikKajaUnited States of America
WiafeSamuelGhana
Wood USAGrantUnited States of America
Xorse AmuzuEvansUnited States of America
YalcouyéAbdoulayeMali
Yee LingCheahMalaysia
YusufAminuNigeria
ZambranoAnaEcuador
ZamoraVanessaGuatemala
ZickBrittanyUnited States of America
ZuccoliJohannaArgentina
-AndreaPeru
-FernandaUnited States of America
-FernandaBrazil
-PhilUruguay
-rizqasulaiman-baradienSouth Africa
-WaseemUnited States of America