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European Parliament 2014-2019

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European Parliament 2014-2019 European Parliament 2014-2019 Committee on Employment and Social Affairs EMPL_PV(2018)0524_1 MINUTES Meeting of 24 May 2018, 9.00-12.30 BRUSSELS The meeting opened at 9:03 hrs on Thursday, 24 May 2018, with Marita Ulvskog (1st Vice- Chair, Acting Chair) presiding. 1. Adoption of agenda EMPL_OJ (2018)0524_1 The agenda was adopted as shown in these minutes. 2. Chair’s announcements 2.1. Interpretation status: All the languages were available, with the exception of Finnish, Bulgarian and Croatian. 2.2. Report on the ongoing interinstitutional negotiations: Social Statistics Draft Regulation (IESS) The third trilogue on IESS (Rapporteur: Tamas Meszerics) took place on 16 May. The next trilogue will take place in Strasbourg on 31 May morning. Protection of workers from the risks related to exposure to carcinogens or mutagens at work - batch 2 (CMD 2) The first and second trilogues on CMD 2 (Rapporteur: Claude Rolin) took place respectively 17 May and 23 May. The third, and last, trilogue will take place on 18 June. 3. Exchange of views, as part of the structured dialogue, with Valdis Dombrovskis (Vice President) and Marianne Thyssen (Commissioner) EMPL/8/03446 Exchange of views PV\1155158EN.docx PE623.619v01-00 EN United in diversity EN Speakers: Valdis Dombrovskis (Vice-President), Marianne Thyssen (Commissioner), David Casa, Agnes Jongerius, Ulrike Trebesius, Rina Ronja Kari, Jean Lambert, Georgi Pirinski, Emilian Pavel, Thomas Mann, Sotirios Zarianopoulos, Edouard Martin, Guillaume Balas 4. Exchange of views with Marianne Thyssen (Commissioner) EMPL/8/03140 Presentation of the legislative proposal establishing a European Labour Authority Speakers: Marianne Thyssen (Commissioner), Jeroen Lenaers, Georgi Pirinski, Ulrike Trebesius, Marian Harkin, Paloma López Bermejo, Terry Reintke, Helga Stevens, Michael Detjen, Agnes Jongerius *** Electronic vote *** 5. Vote on the result of the structured dialogue EMPL/8/13066 Adoption Decision: The EMPL Committee contribution on the structured dialogue was adopted by 34 votes in favour, 3 against and 0 abstention (see results of the roll- call votes in ANNEX I and results of the vote in ANNEX II) *** End of electronic vote *** 6. Workshop: Establishing a European Labour Authority EMPL/8/13102 Exchange of views with Commission representatives and experts Speakers: Federico Pancaldi (DG EMPL, European Commission), Alexia Maniaka- Griva (Head of the Unit Ex-ante Impact Assessment of the European Parliamentary Research Service), Jeroen Lenaers, Georgi Pirinski, Marian Harkin, Jan Cremers (University Tilburg), Vanessa Ludden (Ramboll Consulting), Ellen Vos (University of Maastricht) 7. Next meetings 7 June 2018, 9.00 – 12.30 (Brussels) The meeting ended at 12:31 hrs PE623.619v01-00 2/10 PV\1155158EN.docx EN ANNEX I Results of roll-call votes Contents 1. Vote on the result of the structured dialogue ...............................................................4 1.1. Final vote..............................................................................................................4 Key to symbols: + : in favour - : against 0 : abstention PV\1155158EN.docx 3/10 PE623.619v01-00 EN 1. Vote on the result of the structured dialogue 1.1. Final vote 34 + ALDE Marian Harkin, Robert Rochefort, Jasenko Selimovic EFDD Tiziana Beghin GUE/NGL Rina Ronja Kari, Paloma López Bermejo PPE David Casa, Deirdre Clune, Geoffroy Didier, Agnieszka Kozłowska-Rajewicz, Eduard Kukan, Jérôme Lavrilleux, Jeroen Lenaers, Thomas Mann, Claude Rolin, Fernando Ruas, Rainer Wieland S&D Guillaume Balas, Brando Benifei, Michael Detjen, Giuseppe Ferrandino, Enrique Guerrero Salom, Agnes Jongerius, Jan Keller, Maria Noichl, Rory Palmer, Emilian Pavel, Georgi Pirinski, Siôn Simon, Marita Ulvskog, Flavio Zanonato VERTS/ALE Jean Lambert, Miroslavs Mitrofanovs, Terry Reintke 3 - ECR Arne Gericke, Helga Stevens, Ulrike Trebesius 0 0 Corrections to vote + - 0 EMPL Committee Contribution on the Structured Dialogue S&D requested roll call vote on Additions 2, 6, 10 and 11. According to Rule 208(3) of the Rules of Procedure of the Parliament: “Any single and/or final vote in committee on a report or opinion shall be taken by roll call in accordance with Rule 180(3) and (4). The vote on amendments and other votes shall be taken by a show of hands, unless the Chair decides to proceed to an electronic vote or members or political group(s) reaching at least the high threshold in the committee request a vote by roll call.” High threshold (one-fifth) in EMPL correspond to 11 Members made up of one or more political groups or individual Members, or a combination of the two. PE623.619v01-00 4/10 PV\1155158EN.docx EN Concerned text AM Remarks Vote Paragraph 1 COMP 1 + of the compromise text Addition 1 To be voted as addition to paragraph 1; + if adopted, to be placed after “... without 19/16 undue delay;” Paragraph 2 COMP 2 + of the compromise text Paragraph 3 COMP 3 + of the compromise text Addition 2 RCV requested by S&D1 + To be voted as addition to paragraph 3 19/14/2 if adopted, to be placed at the end of par 3 Falls if COMP 3 rejected Paragraph 4 COMP 4 + of the compromise text Addition 3 To be voted as addition to paragraph 4 + if adopted, to be placed after “... and Mutagens Directive” Falls if COMP 4 rejected Addition 4 To be voted as addition to paragraph 4 + if adopted, to be placed at the end of par 18/17 4 Paragraph 5 COMP 5 + of the compromise text Addition 5 To be voted as addition to paragraph 5 + if adopted, to be placed after “...to be 19/17 adopted at appropriate level” Falls if COMP 5 rejected Addition 6 RCV requested by S&D + To be voted as addition to paragraph 5 17/15/2 if adopted, to be placed after “... social exclusion should be increased” Falls if COMP 5 rejected Addition 7 To be voted as addition to paragraph 5; + if adopted, to be placed at the end of par 5 Paragraph 6 COMP 6 + of the compromise text 1 The EMPL Secretariat received a statement from Member Geoffroy Didier after the vote that he wanted to vote “against” instead of “in favour”: that does not change the result of the vote as announced during the meeting and shown in the above RCV result list PV\1155158EN.docx 5/10 PE623.619v01-00 EN Concerned text AM Remarks Vote Paragraph 7 COMP 7 + of the compromise text Addition 8 To be voted as addition to paragraph 7 + If adopted, to be placed at the beginning of paragraph 7 Paragraph 8 COMP 8 + of the compromise text Addition 9 To be voted as addition to paragraph 8 + If adopted, to be placed after “... 23/13 sustainability of national social security systems;” Addition 10 RCV requested by S&D1 + To be voted as addition to paragraph 8 21/13/2 If adopted, to be placed after “... and the Member States to put forward a concrete” Falls if COMP 8 rejected Addition 11 RCV requested by S&D + To be voted as addition to paragraph 8 21/14/2 If adopted, to be placed at the end of par 8 Falls if COMP 8 rejected VOTE on the EMPL Committee Contribution on the For against abstention(s) Structured Dialogue 34 3 0 1 The EMPL Secretariat received a statement from Member Geoffroy Didier after the vote that he wanted to vote “against”: that does not change the result of the vote as announced during the meeting and shown in the above RCV result list PE623.619v01-00 6/10 PV\1155158EN.docx EN ПРИСЪСТВЕН ЛИСТ/LISTA DE ASISTENCIA/PREZENČNÍ LISTINA/DELTAGERLISTE/ ANWESENHEITSLISTE/KOHALOLIJATE NIMEKIRI/ΚΑΤΑΣΤΑΣΗ ΠΑΡΟΝΤΩΝ/RECORD OF ATTENDANCE/ LISTE DE PRÉSENCE/POPIS NAZOČNIH/ELENCO DI PRESENZA/APMEKLĒJUMU REĢISTRS/DALYVIŲ SĄRAŠAS/ JELENLÉTI ÍV/REĠISTRU TA' ATTENDENZA/PRESENTIELIJST/LISTA OBECNOŚCI/LISTA DE PRESENÇAS/ LISTĂ DE PREZENŢĂ/PREZENČNÁ LISTINA/SEZNAM NAVZOČIH/LÄSNÄOLOLISTA/DELTAGARLISTA Бюро/Mesa/Předsednictvo/Formandskabet/Vorstand/Juhatus/Προεδρείο/Bureau/Predsjedništvo/Ufficio di presidenza/Prezidijs/ Biuras/Elnökség/Prezydium/Birou/Predsedníctvo/Predsedstvo/Puheenjohtajisto/Presidiet (*) Marita Ulvskog, Claude Rolin Членове/Diputados/Poslanci/Medlemmer/Mitglieder/Parlamendiliikmed/Μέλη/Members/Députés/Zastupnici/Deputati/Deputāti/Nariai/ Képviselõk/Membri/Leden/Posłowie/Deputados/Deputaţi/Jäsenet/Ledamöter Guillaume Balas, Tiziana Beghin, Brando Benifei, David Casa, Michael Detjen, Geoffroy Didier, Arne Gericke, Marian Harkin, Rina Ronja Kari, Jan Keller, Agnieszka Kozłowska-Rajewicz, Jean Lambert, Jérôme Lavrilleux, Jeroen Lenaers, Thomas Mann, Miroslavs Mitrofanovs, Emilian Pavel, Georgi Pirinski, Terry Reintke, Robert Rochefort, Siôn Simon, Ulrike Trebesius Заместници/Suplentes/Náhradníci/Stedfortrædere/Stellvertreter/Asendusliikmed/Αναπληρωτές/Substitutes/Suppléants/Zamjenici/ Supplenti/Aizstājēji/Pavaduojantysnariai/Póttagok/Sostituti/Plaatsvervangers/Zastępcy/Membros suplentes/Supleanţi/Náhradníci/ Namestniki/Varajäsenet/Suppleanter Deirdre Clune, Eduard Kukan, Paloma López Bermejo, Edouard Martin, Rory Palmer, Jasenko Selimovic, Helga Stevens, Flavio Zanonato, Sotirios Zarianopoulos 200 (2) Giuseppe Ferrandino, Enrique Guerrero Salom, Maria Noichl, Fernando Ruas, Rainer Wieland 206 (3) 53 (8) (Точка от дневния ред/Punto del orden del día/Bod pořadu jednání (OJ)/Punkt på dagsordenen/Tagesordnungspunkt/ Päevakorra punkt/Ημερήσια Διάταξη Σημείο/Agenda item/Point OJ/Točka dnevnog reda/Punto all'ordine del giorno/Darba kārtības punkts/Darbotvarkės punktas/Napirendi pont/Punt Aġenda/Agendapunt/Punkt porządku dziennego/Ponto OD/Punct de pe ordinea de zi/Bod programu schôdze/Točka UL/Esityslistan kohta/Föredragningslista punkt) PV\1155158EN.docx 7/10 PE623.619v01-00 EN Наблюдатели/Observadores/Pozorovatelé/Observatører/Beobachter/Vaatlejad/Παρατηρητές/Observers/Observateurs/Promatrači/
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  • Call to Action – Newborn Screening for Rare Diseases
    Call to Action – Newborn Screening for Rare Diseases The European Union’s (EU) added value in the field of rare diseases is well known. From the European Reference Networks (ERNs) to the EU research funding programmes, positive strides have been taken on health-related matters. Extrapolating best practices from Member States has also played a crucial role and it is undoubtedly clear that this extrapolation has improved the lives of rare disease patients. It is evident, however, that the EU cooperation on Newborn Screening for Rare Diseases (NBS for RD) is still an underdeveloped area. NBS for RD plays a critical role in improving healthcare outcomes and mortality for rare diseases. In the specific case of primary immunodeficiencies1, the results from recently established programmes at national level demonstrate that newborn screening can dramatically improve the outcomes for infants with Severe Combined Immunodeficiencies (SCID).2 In the field of rare diseases, gathering data on prevalence through regional or national pilot projects over short periods of time can be problematic, especially in those countries with low population or birth rates. For this reason, there is an urgent need to improve the mechanisms by which NBS is assessed and adopted by different EU Member States, for all newborn EU citizens to have the same access to life-saving preventative programmes. Currently, there is no EU centralized body or resource that can act to recommend, guide or share data on newborn screening practices. This leads to the slow uptake of newborn screening in Member States, a live saving tool for babies. In light of the above, we, the undersigned Members of the European Parliament, together with the supporting organisations, including Screen4Rare, a multi-stakeholder initiative launched by the International Patient Organisation for Primary Immunodeficiencies (IPOPI), the International Society for Neonatal Screening (ISNS), the European Society for Immunodeficiencies (ESID), are calling on the European Commission and Member States to: 1.
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