The Voice of Rare Disease
Patients in Europe
#Pledge4RD ahead of the 2019 European elections
From 23 to 26 May 2019, citizens across the EU will vote for the Members of the European Parliament (MEPs) they want to represent them for the next five years.
To ensure that the 25 - 30 million people living with a rare disease in Europe and their families are not left behind and achieve their highest potential of health and well-being, we are calling on MEPs to #Pledge4RD.
Ask your MEP to #Pledge4RD
>> Why should your MEP care?
Because rare is common. Many people are affected by a rare disease or know someone who is.
Rare diseases affect 25-30 million people in the EU, nearly 5% of the EU population, or the population of Belgium and the Netherlands combined. This estimate only increases when considering the carers, families and friends who need to support their loved ones.
There are over 6,000 rare diseases. The reality is that most people know somebody that is affected by a rare disease, whether they realise it or not.
Now is the time to call on your returning MEP or a candidate MEP to pledge their support for rare diseases.
>> How can they #Pledge4RD? <<
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The #Pledge4RD to leave no one behind
To ensure that the 25 - 30 million people living with a rare disease in Europe and their families are not left behind and achieve their highest potential of health and well-being, MEPs can #Pledge4RD to support a new political framework that:
Read the full pledge leaflet
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MEPs & candidates who have pledged
#Pledge4RD #EUelections2019
We thank MEPs and candidates who have already pledged for rare diseases.
See their pledges below:
Czech Republic
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Kateřina KONECNA MEP, GUE/NL
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Denmark
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Eva BORCHORST MEJNERTZ, Radikale Venstre
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Denmark
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Christel SCHALDEMOSE MEP, S&D
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Denmark
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Pernille WEISS, Konservativ
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Denmark
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Anton EBSEN, Radikale Venstre
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Denmark
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Rikke LAURITSEN, Socialistisk Folkeparti
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Finland
| Sirpa PIETIKAÏNEN MEP, EPP |
France
| Françoise GROSSETÊTE MEP, EPP |
Ireland
| Brendan SMITH, Fianna Fáil/strong> |
Ireland
| Sheila NUNAN, Labour |
Italy
| Mercedes BRESSO MEP, S&D |
Italy
| Alessandra MUSSOLINI MEP, EP |
Italy
| Elisabetta GARDINI MEP, EPP |
Latvia
| Sergejs AKULIČS, Latvijas Attīstībai |
Luxembourg
| Gary DIDERICH, déi Lénk |
Luxembourg
| Anne DAEMS, Demokratesch Partei |
Luxembourg
| Christian KMIOTEK, European Greens |
Poland
| Marek PLURA MEP, EPP |
Romania
| Norica NICOLAI MEP, ALDE |
Slovenia
| Tanja FAJON, MEP, S&D |
Slovenia
| Igor ŠOLTES MEP, Greens/European Free Alliance |
Spain
| Juan Ignacio ZOIDO, Partido Popular |
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Støtte fra @Eva Borchorst Mejnertz til #Pledge4RD - tak for det! Eva er kandidat til @Europarl_da for @radikale . Valget handler også om sjældne sygdomme - Læs mere her: sjaeldnediagnoser.dk/valg-til-europ… ……/ #EUelections2019#sjældnesygdomme @eurordis
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#Pledge4RD
#ElectionsEuropéennes
@eurodis
Fir ze verstoen wat et heescht mat enger maladie rare ze liewen, kuckt Temoignagen op: http://rarediseaseday.org/videos -
Støtte fra @SchaldemoseMEP til #Pledge4RD - tak for det! Christel er medlem af @Europarl_da for @Spolitik og genopstiller d. 26. maj.Tak for støtten! Valget handler også om sjældne sygdomme - Læs mere her: sjaeldnediagnoser.dk/valg-til-europ……/
#EUelections2019 #sjældnesygdomme@eurordis
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Med 25 do 30 milijonov ljudi v Evropi živi z redkimi boleznimi. Zavezujem se, da si bom ob vnovični izvolitvi prizadeval za izboljšanje dobrega počutja, zdravja in življenjskih pogojev ljudi, ki živijo z redkimi boleznimi. Ti so pogosti prezrti in pozabljeni s strani družbe. Prepričan sem, da moramo na tem področju tako v Sloveniji kot v Evropi narediti mnogo več! #pledge4RD #zaveza #raredisease #redkebolezni
#EUelections2019 #euvolitve19 @eurordis -
S podpisom #pledge4RD sem se zavezala, da si bom ob morebitni vnovični izvolitvi v @EP_Slovenija še naprej prizadevala za izboljšanje pogojev življenja in dela okoli 25-30 milijonov ljudi z redkimi boleznimi, kolikor jih je danes v Evropi. Med njimi sem tudi sama #EUelections2019
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Jokaiselle eurooppalaiselle potilaalle oikeus hyvään potilaskeskeiseen hoitoon, nopeaan diagnoosiin, helppokäyttöiseen terveysteknologiaan ja riittävään tukeen. #potilaidenoikeudet#EuropeanPatientsRightsDay Nämä prioriteetteinä mm #Pledge4RDeurordis.org/pledge4RD
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Mi impegno a promuovere una politica europea che migliori la diagnosi e garantisca un accesso equo e rapido alle cure per malati affetti da malattie rare e che rafforzi tutele giuridiche, economiche e sociali. #Pledge4RD @eurordis@uniamofimronlus #piueuropa#scriviTestori 🇪🇺🇮🇹
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I'm in Bucarest participating as representative from ALAN-Maladies Rares Luxembourg in the EURORDIS Rare Diseases Europe Annual Meeting. I do my pledge to support RD, something I'm doing after a lot of years and I wll continue to do always. #Pledge4RD#EUelections2019 @eurordis
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Støtte fra @WestermannPeter til #Pledge4RD - tak for det! Peter er kandidat for @SFpolitik til valget til @Europarl_da d. 26. maj. Valget handler også om sjældne sygdomme - Læs mere her: sjaeldnediagnoser.dk/valg-til-europ… … … #EUelections2019 #sjældnesygdomme@eurordis
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#Pledge4RD
#ElectionsEuropéennes
@eurodis
Fir ze verstoen wat et heescht mat enger maladie rare ze liewen, kuckt Temoignagen op:
http://rarediseaseday.org/videos -
#Pledge4RD
#ElectionsEuropéennes
@eurodis
Fir ze verstoen wat et heescht mat enger maladie rare ze liewen, kuckt Temoignagen op:
rarediseaseday.org/videos
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A big thank you to #EUelections2019candidates @garydiderich & @KmiotekCfrom Luxembourg and @EbsenAnton from Denmark for your #Pledge4RD in support of the 30 million people living with a rare disease in Europe. eurordis.org/pledge4rd
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I support #Pledge4RD framework that provides accurate diagnosis, holistic care and seizes opportunities in science & innovation for rare diseases @RareDiseasesIE@EURORDIS #EUElections2019 #EP2019
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2 weeks to #EUelections2019 #EP2019 RDI is calling on returning & candidate MEPs to pledge support for rare diseases! Pledge your support by downloading the #Pledge4RDsign and sharing a photo social media using #Pledge4RD tag rdi.ie/pledge4rd-eu-2…
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#europawahl2019 Die #Seltenen brauchen europaweite Vernetzung für #Forschung #Versorgung Alle Infos auf www.achse-online.de Wir sind auf starke Stimmen im Europäischen Parlament angewiesen. Bittet die KandidatInnen #PLEDGE4RD zu unterstützen- die Kampagne aller nationalen Allianzen für Menschen mit Seltenen Erkrankungen in Europa. #achse_ev #eurordis #raredisease #europeanunion #together -
Støtte fra @EbsenAnton til #Pledge4RD - tak for det! Anton er kandidat for @radikale til valget til @Europarl_da d. 26. maj. Valget handler også om sjældne sygdomme - Læs mere her: sjaeldnediagnoser.dk/valg-til-europ… #EUelections2019#sjældnesygdomme @eurordis
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Replying to @SchaldemoseMEP@SchaldemoseMEP støtter #Pledge4RD! Christel er medlem af Europa-Parlamentet for Socialdemokratiet og genopstiller ved valget d. 26. maj. Tak for støtten! Valget handler også om sjældne sygdomme! Læs mere her: sjaeldnediagnoser.dk/valg-til-europ…#EUelections2019 #sjældnesygdomme@eurordis
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Political support from @NoricaNicolai for the #Alpha1AwarenessDay 💪🏽❤️@ALDEgroup #RareDiseases #Pledge4RD@Alfa1Romania @Alpha1_Global@AlphaFriend @eurordis
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Replying to @PartidoSAIn@PartidoSAIn Para garantizar que los 30 millones de personas que viven con una #enfermedadesraras en #Europa y sus familias no se queden atrás y alcancen su mayor potencial de salud y bienestar, hacemos una llamada a los eurodiputados a #Pledge4RD.
eurordis.org/pledge4RD
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Zavezujem se, da si bom prizadeval za izboljšanje počutja, zdravja in življenjskih pogojev ljudi, ki živijo z redkimi boleznimi. Teh je v Evropi kar 25-30 milijonov, a pogosto so pozabljeni. Prepričan sem,da moramo zanje narediti mnogo več! #pledge4RD#EUelections2019 @eurordis
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🇪🇺Il prossimo 26 maggio, in Italia, si terranno le elezioni dei nuovi membri del Parlamento Europeo.
@eurordis ha lanciato #Pledge4RD, per chiedere ai deputati e ai candidati un impegno a favore delle malattie rare e creare un nuovo quadro politico.
bit.ly/2ULmoS9
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📣#Pledge4RD la campagna di @EURORDIS che invita i membri del Parlamento europeo a sostenere le istanze dei malati rari:
- Diagnosi accurata e cure adeguate
- Piena inclusione
- Cogliere le opportunità da scienza e innovazione
#EUelections2019
👉bit.ly/2IiydbX
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Calling all candidate MEPs running in the #EUelections 2019 – now’s the time to show your support for a new political framework for #rarediseases. Take a look in your pigeonholes to find out how to pledge your support! #Pledge4RDeurordis.org/pledge4RD @karinkadenbach@ckyenge
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.@GrosseteteF Merci pour votre soutien au #maladiesrares pendant vos mandats successifs et au #Pledge4RD d' @eurordis. La communauté des maladies rares vous doit beaucoup.
#EUelections2019
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Ahead of the #EUelections2019 EURORDIS is calling on returning & candidate MEPs to pledge their support for rare diseases! Pledge your support by downloading the #Pledge4RD sign and sharing a photo social media using #Pledge4RDeurordis.org/pledge4RD
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Last night @eurordis met MEPs encouraging them to #Pledge4RD and thank @GrosseteteF for her unwavering support. “Now we need to update policies from the last decade and adapt them to the realities of today, 2030 and beyond” urges Terkel Anderson, President of the Eurordis board.
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Ahead of the #EUelections2019 EURORDIS is calling on returning & candidate MEPs to pledge their support for rare diseases! Join us this evening for a cocktail event @ Bar des Députés from 18.30 and #Pledge4RD@GrosseteteF @elena_gentile@Frederiqueries eurordis.org/pledge4RD
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Cirka 25-30 millioner mennesker i Europa lever med en sjælden diagnose. Som det ser ud nu, så er der mangel på viden på de sjældne diagnoser.
Af den grund støtter jeg EURORDIS’ kampagne #pledge4rd.
Der skal være bedre samarbejde mellem EU-medlemslandene, så vi kan sikre bedre muligheder inden for forskning og innovation. #epvalg2019 🇪🇺 -
I sign the #Pledge4RD in order to ensure that 25-30 millions people living with a rare disease in Europe & their families are not left behind to support a new framework that provides accurate diagnosis,holistic care and seizes opportunities in science&innovation #EUElecciones2019
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Støtte fra @WeissPernille til #Pledge4RD - tak for det! Pernille er spidskandidat for @KonservativeDK til valget til @Europarl_da d. 26. maj. Valget handler også om sjældne sygdomme - Læs mere her: sjaeldnediagnoser.dk/valg-til-europ…#EUelections2019 #sjældnesygdomme@eurordis
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Thank you @marekplura from Poland for supporting rare disease patients and families with your #Pledge4RD for the #EUelections2019! @Europarl_PLeurordis.org/pledge4RD
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Condivido la campagna #Pledge4RD di @uniamofimronlus come candidata al Parlamento europeo garantisco il mio impegno affinché le persone affette da malattie rare in #Europa e le loro famiglie non siano lasciati indietro.
@eurordis #EUelections2019
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Rare diseases affect 25-30 million people in the EU, nearly 5% of the EU population. This estimate only increases when considering the carers, families and friends who need to support their loved ones. I pledge to fight for you. #Pledge4RD #EUelections2019@eurordis
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V Česku žije zhruba 600.000 lidí se vzácným onemocněním a mnoho dalších lidí se o ně stará. Chci je v #EU i nadále podporovat a prosazovat potřebný nový politický rámec #euhealth #Pledge4RD #vzacni2019@eurordis
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Sottoscrivo l’appello #Pledge4RD perché le persone che convivono con una malattia rara e le loro famiglie non siano lasciate sole. Nessuno deve rimanere indietro #EUelections2019 #ElezioniEuropee2019#ContinuareXCambiare@uniamofimronlus @eurordis
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Ho firmato il #Pledge4RD perchè le famiglie di persone che convivono con una malattia rara non siano lasciate sole.
Fallo anche tu.
#ContinuarexCambiare
#EUelections2019
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Ho firmato il # Pledge4RD perchè le famiglie di persone che convivono con una malattia rara non siano lasciate sole.
Fallo anche tu.
#ContinuarexCambiare
#Pledge4RD #EUelections2019 @eurordis@uniamofimronlus
eurordis.org/pledge4RD
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Io ho firmato e tu?
Il mio impegno per sostenere la comunità delle persone affette da malattia rara, affinché venga garantito il raggiungimento di obiettivi per noi vitali.
#ContinuarexCambiare
#Pledge4RD #EUelections2019 @eurordise @uniamofimronlus
uniamo.org/pledge4rd-la-c…
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#Pledge4RD
#ElectionsEuropéennes
@eurodis
Fir ze verstoen wat et heescht mat enger maladie rare ze liewen, kuckt Temoignagen op:
http://rarediseaseday.org/videos -
Støtte fra @LauritsenRikke til #Pledge4RD - tak for det! Rikke er kandidat for @SFpolitiktil valget til @Europarl_da d. 26. maj. Valget handler også om sjældne sygdomme - Læs mere her: sjaeldnediagnoser.dk/valg-til-europ… … #EUelections2019#sjældnesygdomme @eurordis
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A huge thank you to candidates from across Europe @BrendanSmithTD from Ireland @WeissPernille from Denmark, & @SergejsAkulics from Latvia, for your #Pledge4RD in support of 30 million people living with a rare disease in Europe #EUelections2019 eurordis.org/pledge4rd
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Retās slimības ir retas atsevišķi, bet kopējais skarto cilvēku skaits Eiropas savienībā ir 25-30 mljn. Rare diseases are rare separately, but the total number of people affected in the European Union is 25-30 mln. #Pledge4RD#EUelections2019 @eurordis
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Etwa 30 Millionen Menschen, 5% aller Europäer/innen, sind von einer Seltenen Erkrankung betroffen. Am 26. Mai ist #Europawahl. Bitten Sie Ihren Abgeordneten die "Seltenen" zu unterstützen.
Mehr dazu hier: eurordis.org/de/news/unters…
#pledge4RD #EUelections2019 @eurordis
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📰NEW #VASCERN newsletter is out: featuring Caroline van den Bosch in#VASCERNSpotlights, #CPMS update, Baillet Latour Medical Research Awardees, #HHT Do's and Don'ts translated, #Pledge4RD campaign+ more: ➡vascern.eu/?na=archive&em…#RareDiseases #ERNeu #ShareCareCure@EU_Health
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Sjældne Diagnoser anmoder alle danske kandidater til Europa-Parlamentet om at støtte op om #Pledge4RD, som @eurordishar udarbejdet - sjaeldnediagnoser.dk/valg-til-europ… - kontakt din kandidat for at høre om hun eller han vil være med😜
#EUelections2019@Europarl_da #sjældnesygdomme
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Le malattie rare colpiscono 25-30 mln di persone nell'UE, quasi il 5% della popolazione, più indirettamente accompagnatori, famiglie e amici che hanno bisogno di sostenere i loro cari. Mi impegno a combattere per te #Pledge4RD#EUelections2019 @eurordis@uniamofirmonlus
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#Pledge4RD -Più europa anche nelle malattie rare!
eurordis.org/pledge4RD
@Piu_Europa @emmabonino @mrctrdsh@CostHermanin @RicTravaglini@silvjamanzi @gfspadaccia
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Today marks one month to go until the #EUelections2019! Ask your returning or candidate Member of the European Parliament to pledge their support for the rare disease community using the #Pledge4RDsign on social media! eurordis.org/pledge4RD
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Ahead of the upcoming ##EUelections2019@eurordis has launched the #Pledge4RDcampaign! Ask your #Members of the #EuropeanParliament (#MEPs) to #Pledge4RD and pledge their support for #RareDiseases #ERNs More info here: vascern.eu/pledge-support…
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Thank you @marekplura for your continued support of the rare disease community! @KEuropejska @Europarl_PL#Pledge4RD #EUelections2019
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Celých 5️⃣ let prosazuji více práv pacientům - jejich zapojení do rozhodování o léčbě, její proplácení či dostatečné financování výzkumu 👩⚕️ Prosazovala jsem i další výzkum a sdílení celoevropských zdrojů pro léčbu vzácných onemocnění. Nedostatek peněz 💵 na ní nesmí nikdy znamenat rozsudek smrti ❗️A nepřestanu s tím. Zavázala jsem se k tomu evropským pacientským organizacím, ale hlavně pacientům samotným #eurordis #pledge4rd #zdraví #zdravotnictví #politikaprolidi #pacienti #nenechmetotak #ceskalevicespolecne #ksčm #guengl #europeanparliament #euparliament #euparliamentstrasbourg #instaczech #instaeurope #euparliamentbrussel #evropskyparlament #euparliamentstrasbourg #europarlament -
🇪🇺 #EUelections2019: #Pledge4RD, la campagna di #EURORDIS
Chiediamo ai rappresentanti di sostenere le #malattierare! Fallo anche tu per ottenere: ✔ diagnosi e cure adeguate ✔ presa in carico e inclusione sociale ✔ opportunità da scienza e innovazione ->bit.ly/2TZ908x
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Debemos lograr que todas las personas que viven con una enfermedad rara reciban un diagnóstico preciso y una atención adecuada, cuenten con sistemas sociales inclusivos y se aprovechen las oportunidades en ciencia e innovación que les dan esperanza. #Pledge4RD #EUelections2019
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.@spietikainen : thank you very much for supporting @eurordis #Pledge4RD and your engagement for #rarediseases over the years.
We look forward to continuing our work together during the next mandate.
#EUelections2019
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26. Mai Europawahl: Wir fordern für Kinder und Jugendliche mit chronischen Erkrankungen und Behinderungen zeitnah die richtige Diagnose und eine angemessene Versorgung!
#Pledge4RD #EUelections2019
@eurordis
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Important evening for the #rarediseasecommunity @Europarl_EN - launch of the #Pledge4RD to support ensured accurate&timely #diagnosis of RDs, improved inclusiveness of RD patients in healthcare systems & fostered #research & #innovation of RD therapies. @ MEPs: time to pledge!
Page created: 19/04/2019
Page last updated: 16/05/2019
Page last updated: 16/05/2019
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