Post Fata Resurgo ETS - Key Messages

Key Messages - EMAIL

Here you can find the letter to send to

EUROPEAN COMMISSION and EUROPEAN PARLIAMENT

BELOW, YOU CAN FIND THE EMAIL ADDRESSES TO USE

English

Subject: CALL FOR ACTION - Immediate Intervention Needed - Post Fata Resurgo

To the kind Attention of the

President of European Commission - Ms Ursula Von Der Leyen

European Commissioner for Health/Food Safety - Ms Stella Kyriakides

General Director for Health/Food Safety - Ms Sandra Gallina

European Commission Members

President of European Parliament - Mr David Maria Sassoli

Chair of Public Health Committee - Mr Pascal Canfin

European Parliament Members

and For Your Information to the

Executive Director of European Medicines Agency - Ms Emer Cooke

European Medicines Agency Members

Local Drugs & Medicines Authorities

European Public Health Alliance

European Organization for Professionals and Patients with ALS

Orphanet

Dear all,

The week of December 21, 2020 will become part of our modern history: the EMA approved in a record time of just 18 days (beyond the rolling review) the Pfizer/BioNTech anti-Covid-19 vaccine whose application had come after only 328 days from the beginning of the emergency - that January 9, 2020 in which China made Covid-19 known to the world. And on the same day - December 21, 2020 - the European Commission then gave its green light only after a few hours.

Clearly you all already know these facts, but I would like to point them out because they represent what a civilized and modern society should always adopt and use to guarantee common well-being: collaboration, synergy, investments, urgency, use of innovative technologies, transparency, streamlined execution and, above all, sense of responsibility towards those who need help. Covid-19 Vaccines rally represents a watershed between the old & slow world and the new one in which it is possible to find a quick solution to very serious problems - if only it is set as a priority.

What about Amyotrophic Lateral Sclerosis (ALS) / Motor Neuron Disease (MND)?

Cure for ALS does not appear to be a priority - despite being a 100% fatal neuro-degenerative disease.

ALS is a very serious problem.

ALS was first diagnosed over 56,000 days ago and no one knows how to cure it yet.

This makes all people with ALS feel abandoned.

Dear European Commission & European Parliament (and all Regulatory Agencies), we all deserve a system where the speed and the urgency that have been seen in the fight against Covid-19 are the norm and not the exception. We too deserve the level of creativity, cooperation, sense of urgency and sense of responsibility shown by the various Ministries of Health of the different countries, the EMA, the FDA, the EU, the Local Regulatory Agencies and the pharmaceutical industry in this pandemic.

For some small time now, the whole world has had a taste of what it means for a patient diagnosed with a terminal illness such as ALS to be told that there are no tests, that there are no treatments, and that there are no answers.

US President Joe Biden said he will make $50 Billions available to Scientific Research to defeat ALS, Cancer, Alzheimer's and Diabetes.

Where are the European Commission & Parliament for this?

What done and seen so far to defeat the Covid-19 has been monumental, an astonishing achievement in record time. Simply unprecedented. And I do thank you all for that.

But now we need the same approach in the fight against ALS: same major leap forward in the relentless research for a definitive cure.

The power and duty to approve drugs to save the lives of thousands of people with ALS is in your hands as is that of funding scientific research so that a cure for this devastating disease becomes soon a reality.

You have done this for a 5% lethal disease i.e. Covid-19, why not now for a 100% fatal one such as ALS?

In the meantime, it is also necessary to slow down the countdown: it is vital to make a deep and immediate reflection to allow Early/Accelerated Access to Promising Experimental Therapies for those in this life-threatening condition: an opportunity to buy time while waiting for a definitive cure. Some of the current clinical trials represent a real hope to slow down the progression of ALS.

The terminally ill are often invisible but now they also run the serious risk of totally disappearing as a result of this pandemic.

The Europe's Recovery Plan #NextGenerationEU and the next long-term EU budget is worth €1.8 Trillions - the largest package ever financed through the EU budget to rebuild a post-Covid-19 Europe.

I do need and hope there is some room to fix our condition as well.

We feel overwhelmed. We feel lost. We feel forgotten.

Please, help now who is living with a death sentence like an ALS diagnosis: because ALS is not incurable, it is just underfunded - and time is ticking ineluctably.

Warm Regards

https://www.postfataresurgo.org/home-en

EMAIL ADDRESSES "To"

SANTE-PHARMACEUTICALS-B4@ec.europa.eu;

Edit.SZEPESSY@ec.europa.eu;

SANTE-DG@ec.europa.eu;

sandra.gallina@ec.europa.eu;

andrzej.rys@ec.europa.eu;

cab-kyriakides-contact@ec.europa.eu;

ec-president-vdl@ec.europa.eu;

sante-pharmaceuticals-B5@ec.europa.eu;

pascal.canfin@europarl.europa.eu;

office@cristianbusoi.eu;

ondrej.knotek@ep.europa.eu;

adam.jarubas@europarl.europa.eu;

agnes.evren@europarl.europa.eu;

aldo.patriciello@europarl.europa.eu;

alessandra.moretti@europarl.europa.eu;

alexander.bernhuber@europarl.europa.eu;

alexandr.vondra@europarl.europa.eu;

andras.gyurk@europarl.europa.eu;

andreas.glueck@europarl.europa.eu;

andrey.slabakov@europarl.europa.eu;

anja.hazekamp@europarl.europa.eu;

anna.zalewska@europarl.europa.eu;

annalisa.tardino@europarl.europa.eu;

annika.bruna@europarl.europa.eu;

antoni.cominioliveres@europarl.europa.eu;

asger.christensen@europarl.europa.eu;

athanasios.konstantinou@europarl.europa.eu;

aurelia.beigneux@europarl.europa.eu;

bartosz.arlukowicz@europarl.europa.eu;

bas.eickhout@europarl.europa.eu;

biljana.borzan@europarl.europa.eu;

billy.kelleher@europarl.europa.eu;

carlo.calenda@europarl.europa.eu;

catherine.chabaud@europarl.europa.eu;

catherine.griset@europarl.europa.eu;

cesar.luena@europarl.europa.eu;

christel.schaldemose@europarl.europa.eu;

christine.schneider@europarl.europa.eu;

christophe.hansen@europarl.europa.eu;

chrysoula.zacharopoulou@europarl.europa.eu;

cindy.franssen@europarl.europa.eu;

claudia.gamon@europarl.europa.eu;

constanze.krehl@europarl.europa.eu;

cristiansilviu.busoi@europarl.europa.eu;

cristina.maestre@europarl.europa.eu;

d.montserrat@europarl.europa.eu;

dace.melbarde@europarl.europa.eu;

dan-stefan.motreanu@europarl.europa.eu;

daniela.rondinelli@europarl.europa.eu;

danilooscar.lancini@europarl.europa.eu;

delara.burkhardt@europarl.europa.eu;

demetris.papadakis@europarl.europa.eu;

edina.toth@europarl.europa.eu;

eleonora.evi@europarl.europa.eu;

eric.andrieu@europarl.europa.eu;

esther.delange@europarl.europa.eu;

ewa.kopacz@europarl.europa.eu;

frederique.ries@europarl.europa.eu;

fredrick.federley@europarl.europa.eu;

fulvio.martusciello@europarl.europa.eu;

gianantonio.dare@europarl.europa.eu;

grace.osullivan@europarl.europa.eu;

grzegorz.tobiszowski@europarl.europa.eu;

guenther.sidl@europarl.europa.eu;

hermann.tertsch@europarl.europa.eu;

hildegard.bentele@europarl.europa.eu;

idoia.villanueva@europarl.europa.eu;

inese.vaidere@europarl.europa.eu;

irena.joveva@europarl.europa.eu;

istvan.ujhelyi@europarl.europa.eu;

ivan.david@europarl.europa.eu;

ivanvilibor.sincic@europarl.europa.eu;

jadwiga.wisniewska@europarl.europa.eu;

jan.huitema@europarl.europa.eu;

javi.lopez@europarl.europa.eu;

jens.gieseke@europarl.europa.eu;

jessica.polfjard@europarl.europa.eu;

joannamaria.kopcinska@europarl.europa.eu;

joao.ferreira@europarl.europa.eu;

joelle.melin@europarl.europa.eu;

jutta.paulus@europarl.europa.eu;

jytte.guteland@europarl.europa.eu;

karin.karlsbro@europarl.europa.eu;

katerina.konecna@europarl.europa.eu;

laura.huhtasaari@europarl.europa.eu;

lidia.pereira@europarl.europa.eu;

linea.sogaard-lidell@europarl.europa.eu;

liudas.mazylis@europarl.europa.eu;

Ljudmila.novak@europarl.europa.eu;

lucia.vuolo@europarl.europa.eu;

luisa.regimenti@europarl.europa.eu;

mairead.mcguinness@europarl.europa.eu;

malin.bjork@europarl.europa.eu;

manuel.bompard@europarl.europa.eu;

manuel.pizarro@europarl.europa.eu;

marcel.degraaff@europarl.europa.eu;

marco.dreosto@europarl.europa.eu;

marekpawel.balt@europarl.europa.eu;

margarita.delapisacarrion@europarl.europa.eu;

margrete.auken@europarl.europa.eu;

maria.arena@europarl.europa.eu;

maria.spyraki@europarl.europa.eu;

marian-jean.marinescu@europarl.europa.eu;

marie.toussaint@europarl.europa.eu;

marlene.mortler@europarl.europa.eu;

martin.haeusling@europarl.europa.eu;

martin.hojsik@europarl.europa.eu;

michael.bloss@europarl.europa.eu;

michal.wiezik@europarl.europa.eu;

michele.rivasi@europarl.europa.eu;

mick.wallace@europarl.europa.eu;

milan.brglez@europarl.europa.eu;

miriam.dalli@europarl.europa.eu;

mohammed.chahim@europarl.europa.eu;

monika.benova@europarl.europa.eu;

nathalie.colin-oesterle@europarl.europa.eu;

nicolae.stefanuta@europarl.europa.eu;

nicolas.casares@europarl.europa.eu;

nikolaj.villumsen@europarl.europa.eu;

nikos.androulakis@europarl.europa.eu;

nils.torvalds@europarl.europa.eu;

norbert.lins@europarl.europa.eu;

nuno.melo@europarl.europa.eu;

par.holmgren@europarl.europa.eu;

pernille.weiss@europarl.europa.eu;

petar.vitanov@europarl.europa.eu;

peter.liese@europarl.europa.eu;

petra.desutter@europarl.europa.eu;

petros.kokkalis@europarl.europa.eu;

piernicola.pedicini@europarl.europa.eu;

pietro.fiocchi@europarl.europa.eu;

radan.kanev@europarl.europa.eu;

rob.rooken@europarl.europa.eu;

roberta.metsola@europarl.europa.eu;

romana.jerkovic@europarl.europa.eu;

rovana.plumb@europarl.europa.eu;

roza.thun@europarl.europa.eu;

ryszardantoni.legutko@europarl.europa.eu;

sandor.ronai@europarl.europa.eu;

sara.cerdas@europarl.europa.eu;

sarah.wiener@europarl.europa.eu;

sergio.berlato@europarl.europa.eu;

silvia.modig@europarl.europa.eu;

silvia.sardone@europarl.europa.eu;

simona.baldassarre@europarl.europa.eu;

simona.bonafe@europarl.europa.eu;

sirpa.pietikainen@europarl.europa.eu;

sophie.intveld@europarl.europa.eu;

soraya.rodriguezramos@europarl.europa.eu;

stanislav.polcak@europarl.europa.eu;

stefan.berger@europarl.europa.eu;

suncana.glavak@europarl.europa.eu;

susana.solisperez@europarl.europa.eu;

sven.giegold@europarl.europa.eu;

sylvia.limmer@europarl.europa.eu;

sylwia.spurek@europarl.europa.eu;

teuvo.hakkarainen@europarl.europa.eu;

tiemo.woelken@europarl.europa.eu;

tilly.metz@europarl.europa.eu;

traian.basescu@europarl.europa.eu;

tudor.ciuhodaru@europarl.europa.eu;

ulrike.mueller@europarl.europa.eu;

veronique.trillet-lenoir@europarl.europa.eu;

ville.niinisto@europarl.europa.eu;

vincenzo.sofo@europarl.europa.eu;

yannick.jadot@europarl.europa.eu;

eplobelgium@europarl.europa.eu;

epluxembourg@europarl.europa.eu;

epstrasbourg@europarl.europa.eu;

david.sassoli@europarl.europa.eu;

AskEP@europarl.europa.eu;

EMAIL ADDRESSES "Cc"

andrea.laslop@ages.at;

milena.stain@ages.at;

thomas.reichhart@ages.at;

greet.musch@fagg-afmps.be;

karin.janssenvandoorn@fagg-afmps.be;

xavier.decuyper@fagg-afmps.be;

fagg_cp_rap@fagg.be;

bogdan.kirilov@bda.bg;

svetlin.spirov@bda.bg;

mvlaskovska@medfac.mu-sofia.bg;

margareta.bego@halmed.hr;

selma.arapovic@halmed.hr;

sinisa.tomic@halmed.hr;

vili.beros@miz.hr;

emavrokordatou@phs.moh.gov.cy;

ichrysafi@phs.moh.gov.cy;

lpanagi@phs.moh.gov.cy;

cz.chmp@sukl.cz;

irena.storova@sukl.cz;

tomas.radimersky@sukl.cz;

bures@uskvbl.cz;

dir-int@dkma.dk;

dk-chmp@dkma.dk;

ths@dkma.dk;

chmp@ravimiamet.ee;

kristin.raudsepp@ravimiamet.ee;

edward.laane@ut.ee;

eija.pelkonen@fimea.fi;

esa.heinonen@fimea.fi;

outi.maki-ikola@fimea.fi;

jean-pierre.orand@anses.fr;

alexandre.moreau@ansm.sante.fr;

dominique.martin@ansm.sante.fr;

jean-michel.race@ansm.sante.fr;

harald.enzmann@bfarm.de;

janet.koenig@bfarm.de;

leitung@bfarm.de;

martina.weise@bfarm.de;

lars.nickel@bmg.bund.de;

europa@christian-doleschal.de;

enikolaidi@eof.gr;

kmarkopoulos@eof.gr;

vicepresident@eof.gr;

beatrix.horvath@emmi.gov.hu;

gyurasics.agnes@ogyei.gov.hu;

Szentivanyi.Matyas@ogyei.gov.hu;

hrefna.gudmundsdottir@ima.is;

kolbeinn@ima.is;

jayne.crowe@hpra.ie;

peter.kiely@hpra.ie;

rita.purcell@hpra.ie;

direzionegenerale@aifa.gov.it;

elita.poplavska@zva.gov.lv;

janis.zvejnieks@zva.gov.lv;

Svens.henkuzens@zva.gov.lv;

gpridotkas@nmvrvi.lt;

GytisAndrulionis@vvkt.lt;

romaldasmaciulaitis@vvkt.lt;

simonastankeviciute@vvkt.lt;

debeaufort.carine@chl.lu;

Francoise.Berthet@ms.etat.lu;

laurent.mertz@ms.etat.lu;

martine.trauffler@ms.etat.lu;

anthony.serracino-inglott@gov.mt;

helen.vella@gov.mt;

john-joseph.borg@gov.mt;

ca.v.belkum@cbg-meb.nl;

hr.hurts@cbg-meb.nl;

nlhchmp@cbg-meb.nl;

pb.v.hennik@cbg-meb.nl;

bjorg.bolstad@legemiddelverket.no;

ingrid.wang@legemiddelverket.no;

ewa.balkowiec-iskra@urpl.gov.pl;

grzegorz.cessak@urpl.gov.pl;

marcin.kolakowski@urpl.gov.pl;

bruno.sepodes@infarmed.pt;

fatima.ventura@infarmed.pt;

rui.ivo@infarmed.pt;

dana.marin@anm.ro;

marius.sisu@anm.ro;

roxana.stroe@anm.ro;

simona.badoi@anm.ro;

dorota.distlerova@sukl.sk;

frantisek.drafi@sukl.sk;

zuzana.batova@sukl.sk;

hederova@uskvbl.sk;

rajko.kenda@ext.jazmp.si;

momir.radulovic@jazmp.si;

nevenka.trsinar@jazmp.si;

bgarciao@aemps.es;

chernandezg@aemps.es;

cprieto@aemps.es;

sdaem@aemps.es;

RIC@lakemedelsverket.se;

asa.kumlinhowell@mpa.se;

EU-koordination@mpa.se;

Cbalas@alsa-national.org;

nthakur@alsa-national.org;

ryan_losak@boozman.senate.gov;

Joel_heimbach@cruz.senate.gov;

Alex.azar@hhs.gov;

Brian.Harrison@hhs.gov;

Eric.Hargan@hhs.gov;

Lawanda.Harris@hhs.gov;

Rasheed.Williams@hhs.gov;

devin_barrett@inhofe.senate.gov;

jed_cochran@inhofe.senate.gov;

robert.avery@mail.house.gov;

ben_Voelkel@ronjohnson.senate.gov;

Sean_Riley@ronjohnson.senate.gov;

Hannah.J.Castillo@who.eop.gov;

Jennifer.S.Korn@who.eop.gov;

maria.k.bonner@who.eop.gov;

christa.wirthumer-hoche@ages.at;

lorraine.nolan@hpra.ie;

schmr@pei.de;

aiuti.alessandro@hsr.it;

bernd.gansbacher@tum.de;

kcbreen@kcbreen.co.uk;

GROW-D@ec.europa.eu;

GROW-EMA@ec.europa.eu;

GROW-R@ec.europa.eu;

valentina.superti@ec.europa.eu;

Maria-Aranzazu.HERNANDEZ-ANTUNEZ@ec.europa.eu;

info@ema.europa.eu;

Matthias.groote@lkleer.de;

tonio.borg@um.edu.mt;

emer.cooke@ema.europa.eu;

Juan.Garcia@ema.europa.eu;

Nathalie.Bere@ema.europa.eu;

Melanie.Carr@ema.europa.eu;

maria.alves@ema.europa.eu;

ana.hidalgo-simon@ema.europa.eu;

alexis.nolte@ema.europa.eu;

Inga.Abed@ema.europa.eu;

wolf-dieter.ludwig@akdae.de;

marco.greco@eu-patient.eu;

yannis@epha.org;

Adrian.Angheluta@ema.europa.eu;

alice.hughes@fda.hhs.gov;

Andrea.Furia@fda.hhs.gov;

Billy.dunn@fda.hhs.gov;

christine.phipps@fda.hhs.gov;

eric.bastings@fda.hhs.gov;

Janet.Woodcock@fda.hhs.gov;

Peter.Marks@fda.hhs.gov;

epha@epha.org;

rosemary@epha.org;

info@als.eu;

media.orphanet@inserm.fr;

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