Sindee Weinbaum

Leader of ELPA #RareLiverDiseases, Board member of Hetzliver 🇮🇱 🇺🇳🇪🇺🇺🇸

[Sindee Weinbaum @WeinbaumSindee]

@PBCRobert The bigger picture is a difficult one to find a solution to but the picture right now... is very sad

[European Liver Patients' Association @EuropeLiver]

1️⃣8️⃣th Years 🎉🎉🎉 European Liver Patient Voice, #Hepatitis B and C, #Obesity #NAFLD #MAFLD #NASH #Alcohol #LiverCancer
#RareLiverDiseases #Prevention #Screening #Diagnostic #Medicines #Access #Equity #equality #HealthForAll #HealthUnion #EUCancerPlan @EU_Health @SKyriakidesEU

[European Liver Patients' Association @EuropeLiver]

ELPA Vice-President Julio Burman Join us in spreading awareness #WorldLiverDay Be a part of the international movement towards better liver health. @EASLnews @WHO_Europe @EU_Health @Hetz_liver @EU_HaDEA

[European Liver Patients' Association @EuropeLiver]

Today Prof @AutoImmuneLiver gives us a short overview of unmet needs and quality of life of patients with #PBC and #PSC without forgetting the importance of clinical trials.

#RareLiverDiseasesWeek #RareDiseaseDay @eurordis
@rarediseaseday @eupatients
https://t.co/3QsoPLL9Uu

[European Liver Patients' Association @EuropeLiver]

Celebrate International Women's Day with ELPA. Stay tuned and follow us on March 8! @EU_Health @WHO_Europe @EASLnews @Marko_Korenjak @MKDmilanM @VeronikaVsetic @BeaCredi

[European Liver Patients' Association @EuropeLiver]

Living with a rare disease means a lack of answers. It means waiting too long for a diagnosis, and there is often no clear treatment plan @Marko_Korenjak explains why it is crucial to encourage the broadest collaboration possible among all the stakeholders
https://t.co/18mRZawjnU

[European Liver Patients' Association @EuropeLiver]

Stories have power, listen to the ELPA interview with Sindee Weinbaum leader of ELPA's #RareLiverDisease working group and Dr.Savvas Millios #autoimmune #hepatitis #ChangingPerspectives
#RareLiverDiseaseWeek
#WOD2023 #RareDiseaseDay
https://t.co/QrCifXkrJ6

[European Liver Patients' Association @EuropeLiver]

Aims of the meeting and introduction to the Wilson’s Disease Policy Network @WeinbaumSindee leader and Cordinator of the #RareLiverDiseases working group in #ELPA @eurordis @eurordis #RareDiseaseDay @AleksanderKrag @EASLnews @MKDmilanM @Hetz_liver @EU_Health @Marko_Korenjak

[European Liver Patients' Association @EuropeLiver]

The ELPA #RareLiverDiseaseWeek is about to start. Have a look at what we have in store for you, and be ready to share, debate, and comment. Rare diseases are rare by definition, but rare disease patients are many. #RareDiseaseDay @EU_Health @rarediseaseday @eurordis @EASLnews

[European Liver Patients' Association @EuropeLiver]

28th February #RareDiseaseDay Driving EU policy change for people with #RareLiverDiseases started @LjudmilaNovak @Europarl_EN
@Marko_Korenjak @EU_Health @rarediseaseday @eurordis @WHO_Europe @EU_Commission @AleksanderKrag @EASLnews

[European Liver Patients' Association @EuropeLiver]

The ELPA #RareLiverDisease week continues with some info about Wilson Disease. Do you want to know more about the early diagnosis and the management of the disease? Click and listen to Dr Marina Carmen Berenguer!
@eurordis #RareDiseaseDay @rarediseaseday
https://t.co/O9GLucrK62

[European Liver Patients' Association @EuropeLiver]

Being a patient advocate makes me a better person.’ Eduardo Lopez, on his experience with a daughter with LALD. Interviewed by
@WeinbaumSindee, the president of @wolman_lald, he shares more about his life. Believe us; it’s worth a listen #RareLiverDiseases
https://t.co/gW5imkbzlq

[European Liver Patients' Association @EuropeLiver]

#Obesity is expected to increase by 100% between 2020 & 2035
We must protect future generations Stories have power, and listen to the Yiannoula Koulla & Stella mother of a child with a #FattyLiverDisease - overweight #WorldObesityDay #LetsTalkAboutObesity
https://t.co/txawHyBlG8

[European Liver Patients' Association @EuropeLiver]

Why is #Autoimmune #Hepatitis an underdiagnosed liver disease? Discover it in Dr Riveiro’s presentation, and follow us for more content about rare liver diseases. @eurordis @EU_Health @rarediseaseday @asscatinforma
#RareLiverDiseasesWeek
https://t.co/whHpyfn99c

[European Liver Patients' Association @EuropeLiver]

Today Dr Loreto Hierro Llnillo joins ELPA to talk about #Biliary Atresia. ELPA call to all the stakeholders in the field of #rareliverdisease for closer cooperation to improve research, diagnosis, treatment, and quality of life. #RareDiseasesDay
https://t.co/REzHcG93Nr

[European Liver Patients' Association @EuropeLiver]

Panel discussion Driving change in #RareLiverDiseases at the EU level priorities and actions @EU_Health #RareDiseaseDay @eurordis @rarediseaseday @AleksanderKrag @Korenjak @EU_Commission @MKDmilanM @WeinbaumSindee

[European Liver Patients' Association @EuropeLiver]

An insight into #EU action on rare diseases with a focus on rare disease research. Hélène Le Borgne Directorate-General DG for research and innovation @EU_Commission @EU_Health @eurordis @rarediseaseday #RareLiverDiseases @Marko_Korenjak @AleksanderKrag @EASLnews @MKDmilanM

[European Liver Patients' Association @EuropeLiver]

Barriers to best practice care for people living with Wilson’s disease @Karl Heinz Weiss, Salem Medical Center, Germany @eurordis #RareLiverDiseases @EU_Health @rarediseaseday @Marko_Korenjak @AleksanderKrag @EASLnews

[European Liver Patients' Association @EuropeLiver]

The role of patients in improving Wilson’s disease @caroroatta Association Bernard Pepin France @eurordis @rarediseaseday #RareLiverDiseases @EU_Health

[European Liver Patients' Association @EuropeLiver]

Living with Wilson's Diseases - the patient perspective #Rar #RareLiverDiseases