Today, First International NASH Day: A First of its Kind Call to Action for Patients, Individuals at Risk, Medical Staff and Media
Published: Jun 12, 2018
WASHINGTON, PARIS and LONDON, June 12, 2018 /PRNewswire/ -- Today is a first-of-its-kind disease awareness event, the First International NASH Day [https://www.international-nash-day.com ], paving the way for a better care for millions of NASH patients in the future. This ground breaking event aims at raising awareness about a silent killer called NASH, thanks to an open and inclusive collaboration at a global level.
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- A large international coalition of stakeholders committed to raising NASH awareness have joined forces for this special day: patient associations, learned societies, NASH experts, experts in liver and metabolic diseases, key stakeholders in research and development - A content-rich web TV will be made available online today, including 7 programs in 6 languages and addressing key dimensions of this potentially deadly liver yet still little known - Conferences for the general public, for patients and/or for clinicians as well as street awareness events are organized in more than 25 cities across the globe
Why is this day important?
Individuals at risk need to be made aware of the threat, so that they become well aware of the importance of health monitoring and pay more attention to their lifestyles, in order to prevent the disease from appearing. NASH patients need a voice, for their fight against the disease to be broadly recognized. These patients typically lack easy-to-digest information, and face several stigmas associated with liver disease in general or NASH and cirrhosis in particular. Last, the medical community as whole has to learn how to collaborate so that NASH patient clinical management is optimized.
Brian Christie, television news journalist, talk show host, former CNN-anchor, and NASH patient: "I'm glad so many experts are getting their voice heard today. NASH took me by surprise and I want to make everything possible to ensure that people are better informed and prepared. What you feel when you discover you have such a late stage disease is terrible. Not only do you suddenly understand that you have a serious life threatening condition, totally unexpected, but you are also being told that there is not a single treatment available to treat you! And yet, I consider myself among the lucky ones! First, because my doctor if one of the most prominent hepatologists in the world, and then, because I have never been accused of alcohol abuse or suffering from other misconceptions too often associated with chronic liver diseases. This is why I'm so glad to see what The NASH Education Program has managed to achieve in just one year... setting-up the first-of-its-kind international NASH Day is quite an accomplishment ! And it's undoubtedly highly relevant to build a coalition of key stakeholders to spread awareness, involving patient advocacy groups and non-profit organizations, as well as the best experts in the world of hepatology and metabolic diseases. All this helps to address patients' unmet needs."
David Frank, who lost his father to NASH, stresses the importance of a support system in battling a disease that requires drastic lifestyle change and self-discipline to gain control over. He also points that if genetics play a role, they are neither a determinant nor a necessity to develop the disease: "You don't need a genetic predisposition or family history. You don't need to have a "risky" lifestyle. You just need to be overweight for a period of time."
Recognition of the cause at the political level
Actions carried out over the last months by The NASH Education Program(TM) with the support of its partners have contributed to a broader recognition - at the political level - of the threat represented by NASH. To give a few examples: a congressional briefing took place in Washington DC on June 11; mayors proclamations have been signed in a few major cities of the United-States recognizing June 12 as the International NASH Day; NASH patients have been given a chance to share their experience and provide insightful perspectives on the disease at the European Parliament in Brussels; NASH will be subject to a special section in the upcoming 2019 National Plan for Health and Nutrition in France; the Ministry of Health is participating to NASH Day in Turkey. All of this is hopefully just the beginning of a larger recognition of the unmet needs associated with the disease.
Symbolic launch of the 1st International NASH Day
The open and inclusive collaboration behind the First International NASH Day has been materialized by the call to action [https://www.the-nash-education-program.com/wp-content/uploads/2018/06/2018.06.05-PR-EN-Call-To-Action-FINAL.pdf ] sent to the world on June 5, 2018 by 150 experts in liver and metabolic diseases. Most continents are represented.
It was a year ago in Europe that this groundbreaking initiative took shape thanks to a new impetus given by stakeholders specialized in NASH, liver and metabolic diseases. Since then, the heart of the global set-up remains European, with a pivotal role in supervising and coordinating the event.
Latin America has played a pivotal role in promoting the initiative across essential countries with populations particularly exposed to the risk of NASH, and has managed to create strong dynamics in the region.
In Asia, Singapore and Hong-Kong have taken some early steps to be part of the dynamics paving the way for a stronger involvement in 2019.
The United States have for many years been exposed to the threat represented by NASH, and for this first edition have been chosen to host the symbolic launch of the International NASH Day, with a ribbon cutting ceremony at the U.S. Capitol Hill, Washington DC in presence of Ms. Pascaline Clerc (US campaign manager and US spokesperson - The NASH Education Program(TM)), Ms. Donna Cryer (CEO - Global Liver Institute), Dr. Katherine Greene (Senior Research Associate - Liver Forum), Ben Goodman (NAFLD patient and son of a NASH patient, and staff assistant for a member of the U.S. House of Representatives), and Pr. Stephen A. Harrison (MD, PhD, Medical Director of Pinnacle Clinical Research, San Antonio, Texas; Visiting Professor of Hepatology at the Radcliffe Department of Medicine, University of Oxford; and member of the scientific committee of The NASH Education Program(TM)).
Online WebTV program
This program is made available on https://www.international-nash-day.com and is divided into 7 independent sections:
- NASH (1/7): What is it? - Speakers: Pr Stephen Harrison, Pr Sven Francque
In this first TV show you will understand - thanks to a worldwide overview - how little-known NASH is and why this situation has to be changed. Liver experts will go over non-alcoholic steatohepatitis (NASH) details, its mechanisms, consequences, symptoms and the stigmas associated with liver diseases. These will also be highlighted by a patient testimony at the end of the video.
- NASH (2/7): How common is it? - Speakers: Pr Mary Rinella, Pr Marco Arrese, Pr Joel Lavine
In this second TV show, you will understand how widespread NASH is, with prevalence figures and future projections presented. During the interviews, livers experts will address NASH frequency, genetic predispositions, how children are now subject to this preventable disease, and which populations are most commonly affected.
- NASH (3/7): Who is at risk? - Speakers: Pr Kenneth Cusi, Pr Jorn M. Schattenberg, Pr Elisabetta Bugianesi
In this third TV show, you will discover that NASH is much more than just a liver disease and that it is related to metabolic disorders - such as diabetes and obesity - and closely linked to modern lifestyles: unhealthy diets and lack of physical exercise. The diverse speaker panel will explain why some people are more at risk than others and how much exercise can help, if sufficient and sustained. Lastly, the video will follow patients associations in their mobilizations against NASH.
- NASH (4/7): Getting Diagnosed - Speakers: Pr Salvador Augustin, Pr Vlad Ratziu, Pr Jean-Francois Dufour, Pr Quentin Anstee
In this fourth TV show, you will discover how much of a challenge NASH diagnosis is - mainly because NASH is a silent disease (with no symptoms) which makes it difficult to diagnose - and how current procedures can be a bottleneck in the patient journey. Liver experts will explain the current invasive and non-invasive diagnostic techniques used when NASH is suspected, as well as the latest research in novel diagnostic tools and what the future holds in terms of diagnosis.
- NASH (5/7): Disease evolution and consequences - Speakers: Pr Veronica Miller, Pr Vlad Ratziu
In this fifth TV show, you will learn more about the consequences of non-alcoholic steatohepatitis in the liver, but also in the rest of the body since it is associated to a number of conditions. A sports journalist will share his testimony as a NASH patient that overcame a liver and a kidney transplant as a last resort to survive, and the Executive Director of The Liver Forum will explain how experts work to research the best patient clinical management solutions. In the end, you will know more about the consequences on health, the consequences on the economy, stigmas, lessons learned and the dire need for awareness.
- NASH (6/7): Patient care and clinical management - Speakers: Pr Laurent Castera, Pr Bertrand Cariou and colleagues, Tom Nealon
In this sixth video, you will discover how much of a challenge patient management is, and especially, how we can answer this burning question: "how can we care for patients in the absence of treatment?" - Today, on top of the lifestyle change (weight loss and exercise) ongoing research on therapeutic solutions paves the way for a better patient care. Moreover, you'll discover how physicians are all working hand in hand to cover all the aspects of this multi-faceted disease. Finally, you will have the opportunity to hear the American Liver Foundation's CEO's perspectives on NASH.
- NASH (7/7): What perspectives? - Speakers: Pr Arun Sanyal, Donna Cryer, Pr Philip Newsome
In this seventh and last video, you will learn more about the next key challenges in the field of NASH, and about the crucial need for awareness and public policy. Experts will give some forecast about NASH, ongoing research and shed light on future management solutions. You will get insights on the economic burden of NASH and the need for all stakeholders to be involved in NASH awareness. To conclude these seven sequences, there will be a special focus on how street art can help increase awareness to a young urban population particularly exposed to the risk of NASH - and on what we can hope for in the future.
Program of on-site activities in 25+ cities across the globe
All details about official activities can be found on the official website of the event:
- Patients and physicians conferences
Barcelona (Spain) - Brussels (Belgium) - Durham (USA) - Istanbul (Turkey) - Lille (France) - London (UK) - Mainz (Germany) - Mexico (Mexico) - Miami (USA) - New-York (USA) - Nice (France) - Paris (France) - Philadelphia (USA) - Saint-Louis (USA) - Santiago de Chile (Chile) - San Antonio (USA) - San Diego (USA) - Sevilla (Spain) - Washington DC (USA)
- Street awareness happenings and others
Berlin (Germany) - Boston (USA) - Brussels (Belgium) - Hong-Kong (China) - Istanbul (Turkey) - Lausanne (Switzerland) - Lille (France) - London (UK) - Madrid (Spain) - Mainz (Germany) - Mexico (Mexico) - Miami (USA) - New-York (USA) - Nice (France) - Paris (France) - Phoenix (USA) - Roma (Italy) - San Antonio (USA) - San Diego (USA) - Singapore - Stockholm (Sweden) - Washington DC (USA)
- Free patients screenings
Antwerp (Belgium) - Brussels (Belgium) - Maastricht (The Netherlands) - Mexico (Mexico) - San Antonio (USA)
Note that while most activities are taking place on June 12, several events have also been organized a few days ahead of the 1st International NASH Day. The campaign will also continue after June 12.
Key opinion leaders from several countries across the globe are involved in the preparation of several local conferences, in collaboration with The NASH Education Program (TM). We want to commend specifically:
- The four members of the scientific committee of The NASH Education Program: Pr. Harrison, Pr. Francque, Pr. Cusi, Pr. Cariou. - Organizers of special events: Dr. Manal Abdelmalek, Dr. William Alazawi, Pr. Francesco Angelico, Dr. Rodolphe Anty, Pr. Marco Arrese, Dr. Salvador Augustin, Dr. Stefan Bourgeois, Dr. Fernando Bril, Dr. Rotonya Carr, Pr. Kenneth Cusi, Pr. Laurent Castera, Dr. Yock Young Dan, Pr. Sven Francque, Dr. Adrian Gadano, Pr. Stephen Harrison, Dr. Anita Kholi, Pr. Laura Ladron de Guevara, Pr. Nicolas Lanthier, Pr. Rohit Loomba, Dr. Penelopi Manousou, Pr. Nahum Mendez-Sanchez, Pr. Veronica Miller, Pr. Manuel Romero-Gomez, Dr. Jorn Schattenberg, Dr. Brent Tetri, Dr. Emmanouil Tsochatzis, Dr. Julia Wattacheril, Dr. Allan Wolkoff, Dr. Yusuf Yilmaz
Social networks activities
As a reminder official hashtags are #NASHday #MacLiver
- Official website [https://www.international-nash-day.com ] - Twitter [https://twitter.com/intNASHday ] - Facebook [https://www.facebook.com/intNASHday ] - Instagram [https://www.instagram.com/intnashday ] - Youtube [https://www.youtube.com/channel/UCj1eqAIJuP5K-zOaHR33gxg/videos) ] - LinkedIn [https://www.linkedin.com/company/nash-education-program ]
Global supporters and benefactors
- American Liver Foundation (ALF) [https://www.liverfoundation.org ] - Association of Asian Pacific Community Health Organizations (AAPCHO) [http://www.aapcho.org/ ] - Barc [http://www.barclab.com ] - British Liver Trust (BLT) [https://www.britishlivertrust.org.uk ] - Covance [https://www.covance.com ] - Cymabay Therapeutics [http://www.cymabay.com ] - Delpharm [http://www.delpharm.com/en ] - Diafir [http://www.diafir.com ] - Echosens [https://www.echosens.com/en ] - Enanta Pharmaceuticals [https://www.enanta.com/home/default.aspx ] - Fatty Liver Foundation (FLF) [https://www.fattyliverfoundation.org ] - Genfit [http://www.genfit.com ] - Global Liver Institute (GLI) [http://www.globalliver.org ] - Health Unlocked [https://healthunlocked.com ] - Inventiva Pharma [http://inventivapharma.com/ ] - IQVIA [https://www.iqvia.com ] - Liver Forum - Forum for Collaborative Research [http://www.hivforum.org/projects/liver-forum ] - National Hispanic Council on Aging (NHCOA) [http://www.nhcoa.org ] - National Hispanic Medical Associations (NHMA) [https://www.nhmamd.org ] - Parexel [https://www.parexel.com ] - The Latin American Association for the Study of the Liver (ALEH) [http://alehlatam.org/en ] - The Spanish Association for the Study of the Liver (AEEH) [http://aeeh.es ] - CM-CIC Market solutions [https://www.cmcicms.com/en ]
Local supporters and benefactors
- Histoindex [http://www.histoindex.com ] (Singapore)
NASH, or nonalcoholic steatohepatitis, is a metabolic disease characterized by the accumulation of fat in the liver, along with inflammation and the degeneration of liver cells. The disease is associated with long-term risk of progression into diminished liver functionality, leading to non-alcoholic cirrhosis, liver insufficiency and possibly even liver cancer. It also is associated with an increased risk of cardiovascular diseases which represent the leading cause of mortality for NASH patients. The rise of NASH is connected to type 2 diabetes and obesity epidemics that are growing globally.
About The NASH Education Program(TM)
The non-profit NASH Education Program defines and drives initiatives in collaboration with an independent scientific committee composed of four international key opinion leaders in the hepatic and metabolic disease ecosystems in the U.S. and Europe. To learn more, visit http://www.the-nash-education-program.com.
Contact The NASH Education Program(TM) firstname.lastname@example.org Pascaline Clerc - U.S. Campaign Manager | email@example.com Press Relations For the EU: Ulysse Communication | Bruno Arabian | firstname.lastname@example.org | +33 687884726 For the US: SuSiglo Media | Maritza Puello | email@example.com | +1-917-886-349
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SOURCE The NASH Education Program