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Introduction

These Terms and Conditions govern your use of our website. By using our website, you agree to these Terms and Conditions in full. If you disagree with these Terms and Conditions or any part of these Terms and Conditions, you must not use our website. We do not recognise any conflicting or differing terms and conditions – unless we have specifically agreed otherwise in writing.

You must be at least 18 years of age to use our website. By using our website and by agreeing to these Terms and Conditions, you warrant and represent that you are at least 18 years of age.

Our website uses cookies. By using our website and agreeing to these Terms and Conditions, you consent to our use of cookies in accordance with the terms of our privacy policy.

Changes to our Terms and Conditions

These Terms and Conditions may be updated at any time. If a meaningful change is made to the Terms and Conditions, you will be informed via a notification on this website. As such, please review the Terms and Conditions on a regular basis as you are responsible for regularly reviewing our website to ensure prompt notification of any updates to our Terms and Conditions.

Please note that if you continue to use the website after the Terms and Conditions have been updated, your continued use will act as notification and acceptance of any changes. Therefore, if you do not agree to the changes, you should immediately stop using the website.

The Terms and Conditions that apply to your use of our website are those that are in force at the time of accessing or using our website; unless any changes to these Terms and Conditions are required to be made by law or governmental authority. In such cases, the Terms and Conditions that apply are those to the extent that such changes have retrospective effect in law.

The following Terms and Conditions will continue, even after your user access expires or is cancelled:

Licence to use website

All copyrights, proprietary rights and other third-party rights to the website and its content remain the sole property of their respective holders and are protected accordingly. Subject to the licence below, all these intellectual property rights are reserved.

You may view, download for caching purposes only, and print pages from the website for your own personal use, subject to the restrictions set out below and elsewhere in these Terms and Conditions.

You must not

  • Except with our prior written approval, republish material from this website (including republication on another website);
  • sell, rent or sub-license material from the website;
  • show any material from the website in public;
  • reproduce, duplicate, copy or otherwise exploit material on our website for a commercial purpose;
  • edit or otherwise modify any material on the website;
  • or redistribute material from this website (except for content specifically and expressly made available for redistribution).

Acceptable use

You may use the website, content, and services for lawful, personal, non-commercial purposes only as described in these Terms and Conditions.

You must not use our website in any way that causes, or may cause, damage to the website or impairment of the availability or accessibility of the website; or in any way which is unlawful, illegal, fraudulent or harmful, or in connection with any unlawful, illegal, fraudulent or harmful purpose or activity.

You must not use our website to copy, sell, resell, store, host, transmit, send, use, publish or distribute any material which consists of (or is linked to) any spyware, computer virus, Trojan horse, worm, keystroke logger, rootkit or other malicious computer software.

You must not conduct any systematic or automated data collection activities (including, without limitation, scraping, data mining, data extraction and data harvesting) on or in relation to our website without our express written consent.

You must not use our website to transmit or send unsolicited commercial communications.

You must not use our website for any purposes related to marketing without our express written consent.

Restricted access

Access to certain areas of our website is restricted. We reserve the right to restrict access to other areas of our website, or indeed our whole website, at our discretion.

If we provide you with or you generate a user ID and password to enable you to access restricted areas of our website or other content or services, you must ensure that the password is kept secure and confidential.

You must notify us in writing immediately if you become aware of any unauthorised use of your account or password.

You are responsible for any activity on our website arising out of any failure to keep your password confidential and may be held liable for any losses arising out of such a failure.

You must not use any other person’s user ID and password to access our website.

We may disable your user ID and password at any time in our sole discretion with or without notice or explanation.

Website changes

We may, at any time and from time to time, add to, replace, modify or discontinue, temporarily or permanently, the website with or without notice.

We may cancel or suspend your access to the website with immediate effect in our sole discretion and without notice if you breach these Terms and Conditions. We will remove any material that violates these Terms and Conditions or our Privacy Notice.

User content

In these Terms and Conditions, “your content” means any material (including, without limitation, text, images, audio material, video material and audio-visual material) that you submit to our website, for whatever purpose.

You grant our partners a worldwide, irrevocable, non-exclusive, royalty-free licence to use, reproduce, adapt, publish, translate and distribute your content in any existing or future media. You also grant to us the right to sub-license these rights and the right to bring an action for infringement of these rights.

You warrant and represent that your content will comply with these Terms and Conditions.

Your content must not be offensive, obscene, illegal, unlawful or an infringement of a third party’s legal rights and must not be capable of giving rise to legal action whether against you or us or a third party (in each case under any applicable law).

You must not submit any content to the website that is or has ever been the subject of any threatened or actual legal proceedings or other similar complaint.

We reserve the right to edit or remove any material submitted to our website, or stored on our servers, or hosted or published upon our website.

Notwithstanding our rights under these Terms and Conditions in relation to your content, we do not undertake to monitor the submission of such content to, or the publication of such content on, our website.

Limited warranties

We do not warrant the completeness or accuracy of the information published on this website nor do we commit to ensuring that the website remains available or that the material on the website is kept up to date. In particular, we do not warrant that the functions contained in the material contained in this website will be uninterrupted or error free, that defects will be corrected, or that this website or the server that makes it available are free of viruses or bugs or represents the full functionality, accuracy, and reliability of the materials.

As far as information and products offered by third-party businesses and individuals are concerned, we only provide the technical platform. Such content or offers made available to you by third parties are property of their respective creators, authors or distributors and not ours. Therefore, for the avoidance of doubt, we are under no circumstances responsible for the accuracy or reliability of such content, information or offerings. In particular, except as set out in these Terms and Conditions, we accept no liability for any loss or damage you may incur through reliance on such information.

To the maximum extent permitted by applicable law, we exclude all representations, warranties and conditions relating to this website and the use of this website (including, without limitation, any warranties implied by law in respect of satisfactory quality, fitness for purpose and/or the use of reasonable care and skill).

Limitations and exclusions of liability

Nothing in these Terms and Conditions will: (a) limit or exclude our or your liability for death or personal injury resulting from negligence; (b) limit or exclude our or your liability for fraud or fraudulent misrepresentation; (c) limit any of our or your liabilities in any way that is not permitted under applicable law; or (d) exclude any of our or your liabilities that may not be excluded under applicable law.

The limitations and exclusions of liability set out in this section and elsewhere in these Terms and Conditions: (a) are subject to the preceding paragraph; and (b) govern all liabilities arising under these Terms and Conditions or in relation to the subject matter of these Terms and Conditions, including liabilities arising in contract, in tort (including negligence) and for breach of statutory duty.

To the extent that the website and the information and services on the website are provided free of charge, we will not be liable for any loss or damage of any nature.

We will not be liable to you in respect of any losses arising out of any event or events beyond our reasonable control.

We will not be liable to you in respect of any business losses, including (without limitation) loss of or damage to profits, income, revenue, use, production, anticipated savings, business, contracts, commercial opportunities or goodwill.

We will not be liable to you in respect of any loss or corruption of any data, database or software.

We will not be liable to you in respect of any special, indirect or consequential loss or damage.

Indemnity

You hereby indemnify us and undertake to keep us indemnified against any losses, damages, costs, liabilities and expenses (including, without limitation, legal expenses and any amounts paid by us to a third party in settlement of a claim or dispute on the advice of our legal advisers) incurred or suffered by us arising out of any breach by you of any provision of these Terms and Conditions, or arising out of any claim that you have breached any provision of these Terms and Conditions.

Breaches of these Terms and Conditions

Without prejudice to our other rights under these Terms and Conditions, if you breach these Terms and Conditions in any way, we may take such action as we deem appropriate to deal with the breach, including suspending your access to the website, prohibiting you from accessing the website, blocking computers using your IP address from accessing the website, contacting your internet service provider to request that they block your access to the website or bringing court proceedings against you.

Variation

We may revise these Terms and Conditions from time to time. Revised Terms and Conditions will apply to the use of our website from the date of publication of the revised Terms and Conditions on our website.

Assignment

We may transfer, sub-contract or otherwise deal with our rights or obligations under these Terms and Conditions without notifying you or obtaining your consent.

You may not transfer, sub-contract or otherwise deal with your rights or obligations under these Terms and Conditions.

Severability

If a provision of these Terms and Conditions is determined by any court or other competent authority to be unlawful and/or unenforceable, the other provisions will continue in effect. If any unlawful and/or unenforceable provision would be lawful or enforceable if part of it were deleted, that part will be deemed to be deleted, and the rest of the provision will continue in effect.

Exclusion of third party rights

These Terms and Conditions are for the benefit of you and us, and are not intended to benefit any third party or be enforceable by any third party. The exercise of our and your rights in relation to these Terms and Conditions is not subject to the consent of any third party.

Entire agreement

These Terms and Conditions, together with our privacy policy and cookies policy, constitute the entire agreement between you and us in relation to your use of our website and supersede all previous agreements in respect of your use of our website.

Law and jurisdiction

These Terms and Conditions will be governed by and construed in accordance with English law, and any disputes relating to these Terms and Conditions will be subject to the exclusive jurisdiction of the courts of England and Wales.

Our details

The full name of our company is Springer Healthcare Limited.

We are registered in England and Wales under registration number 06032554.

Our registered address is The Campus, 4 Crinan Street, London N1 9XW.

You can contact us by email to

This policy was last updated on December 13, 2021.

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© 2024 Springer Healthcare IME, part of Springer Nature Group

Funding

AstraZeneca and Alexion, AstraZeneca Rare Disease have provided an unrestricted educational grant towards this independent program.

Contact us

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Springer Healthcare IME
The Campus, 4 Crinan Street, London, N1 9XW, UK

Professor Marianna Fontana

Professor Marianna Fontana

University College London, UK

Marianna Fontana is Professor of Cardiology and is an Honorary Consultant Cardiologist at the Royal Free Hospital, University College London, where she is Director of the UCL Cardiac MRI unit, deputy Head of Center for Amyloidosis and deputy clinical lead of the National Amyloidosis Center.

Professor Fontana obtained her Medical degree (MD) and qualifications as a cardiologist at the University of Pisa in 2011. In 2012 she obtained a BHF Clinical Research Training Fellowship to undertake a PhD at UCL which focused on CMR in cardiac amyloidosis. In 2015 she became Senior Lecturer at UCL, Honorary Consultant Cardiologist and Director of the UCL CMR unit at the Royal Free Hospital, which she founded. In 2018 Prof Fontana was awarded an Intermediate Clinical Fellowship by the BHF. She was appointed deputy Head of Center for Amyloidosis and Acute Phase Proteins and deputy clinical lead of the National Amyloidosis Center in 2019. She took up the chair of Cardiology at UCL in 2020.

Professor Fontana’s major clinical and research interests are in the delivery of efficient and effective care for patients with amyloidosis, with a particular focus on new technologies: imaging and drugs. She lectures widely in the UK and internationally on amyloidosis, and organises many multi-professional educational events. She advises industry at all stages in the lifecycle of innovative products that can help improve the life-expectancy and quality of life of patients with amyloidosis. She is the recipient of numerous awards, including the Michael Davies Early Career Award in 2021 and the BHF Fellow of the year award in 2022. She has co-authored 252 peer reviewed publications with >18000 citations (h-index 71).

Disclosures
Marianna Fontana has received research grants from Pfizer, Eidos, Alnylam, and AstraZeneca. She has provided consultancy and/or been on Advisory boards for Attralus, Alnylam, Prothena, Akcea, Pfizer, Ionis, Intellia, Alexion, Novo Nordisk, Jennsen, AstraZeneca, Lexeo, and Cardior.

Dr Vaishali Sanchorawala

Dr Vaishali Sanchorawala

Boston University Chobanian & Avedisian School of Medicine, USA

Dr Sanchorawala’s research has led and defined the field in AL amyloidosis. She is recognized as one of the leading international experts and a key opinion leader in amyloidosis. With numerous publications and meeting presentations, she has been one of the pioneers in the field of clinical research in AL amyloidosis. Her work in the treatment of AL amyloidosis has been published in many peer-reviewed journals and has resulted in the evolution of the standard of care for these patients. She is currently heading many clinical trials in the treatment of AL amyloidosis. She has helped to create and cultivate the next generation of physician-scientists in the area of clinical research in amyloidosis, many of whom today play leadership roles in distinguished centers around the world.

Dr Sanchorawala serves on the executive steering committee of the Amyloidosis Research Consortium and as an associate editor of Amyloid, Journal of Protein Folding Disorders. She served as a secretary for the International Society of Amyloidosis from 2020-2022 and chair of the membership committee of the International Society of Amyloidosis from 2020-2022. She has been an invited speaker and session chair nationally and internationally.

Her influence extends beyond the groundbreaking and paradigm-shifting work in the field of amyloidosis. In addition to her scientific achievements and accolades, she is a beloved teacher, a caring mentor, and a compassionate physician with exceptional clinical acumen. She has an interest in working in charity organizations. She helps cook meals for ~300 underserved individuals at a meal center in Massachusetts (1-2 times a month) and volunteer regularly at “Cradles to Crayons” charity, non-profit organization.

Disclosures
Vaishali Sanchorawala has received research support, acted as PI for Celgene, Millennium-Takeda, Janssen, Prothena, Sorrento, Karyopharm, Oncopeptide, Caelum, and Alexion.
She has provided consultancy and/or been on Advisory boards for Pfizer, Janssen, Attralus, GateBio, Proclara, Caelum, Abbvie, Regeneron, Protego, Pharmatrace, Telix, Prothena, AstraZeneca, and Naxcella.

Dr Laura Obici

Dr Laura Obici

Amyloidosis Research and Treatment Center, IRCCS Fondazione Policlinico San Matteo, Pavia

Laura Obici is Consultant at the Amyloidosis Research and Treatment Center, IRCCS Fondazione Policlinico San Matteo, Pavia. In February 2023 she was also appointed Head of the Rare Diseases Unit at Fondazione IRCCS Policlinico San Matteo. She was awarded her Medicine and Surgery degree with honors from the University of Pavia, Pavia, in 1994, and was later awarded a Master’s degree in molecular medicine and genetic epidemiology. In 2000, she became a specialist in internal medicine at the University of Pavia.

Dr Obici’s main research interests include the molecular mechanisms of systemic amyloidosis, the prognosis and therapy of systemic amyloidosis, and the genetic basis of hereditary amyloidosis and hereditary periodic fever syndromes.

Dr Obici was Secretary of the International Society for Amyloidosis from 2010 to 2014 and has participated as Principal Investigator/Co-investigator in twelve clinical trials of novel drugs for the treatment of hereditary amyloidosis and hereditary periodic fever syndromes. She has co-authored 195 peer-reviewed publications in international journals, including The New England Journal of Medicine, Amyloid and Journal of Molecular Biology.

Disclosures
Laura Obici has received honoraria and/or consultation fees from Pfizer, Alnylam, Astra Zeneca, Novo Nordisk, BridgeBio,and SOBI.

Professor David Adams

Professor David Adams

Université Paris Saclay

David Adams is Professor of Neurology at the Université Paris Saclay, and Head of the Department of Neurology (2009-2023), Centre Hospitalier Universitaire Bicêtre, at Assistance Publique-Hôpitaux de Paris,. He was Head of the French National Reference Centre for Familial Amyloidotic Polyneuropathy (FAP) and other rare peripheral neuropathies from 2005 to 2021. His clinical expertise includes peripheral neuropathies, including FAP and other rare peripheral neuropathies, and he is particularly involved in the evaluation of the effects of disease-modifying therapies on neuropathy in patients with FAP in France including liver transplantation and innovative therapies including RNAi therapies and the neurological risks of domino liver transplantation.

Professor Adams has been an Advisory Board member for the International Symposium on FAP, and also organized the first European Congress on Hereditary ATTR Amyloidosis in 2015 in Paris, and the 1st European ATTR Amyloidosis Meeting for Patients and Doctors in 2017 in Paris. He has been a board member of the Peripheral Nerve Society and the European Academy of Neurology Scientific Panel Neuropathies and Président of the French speaking of Peripheral neuropathies ((2019-2021). He was Principal Investigator in many multicentric clinical trials for FAP (AATRv-PN) including APOLLO-A, HELIOS-A.

Disclosures
David Adams has received consultancy fees from Alnylam and AstraZeneca.

Dr Paolo Milani

Dr Paolo Milani

Assistant Professor, University of Pavia, Italy

Paolo Milani completed his medical training at the University of Pavia, Italy, where he later specialized in internal medicine and completed further qualifications in experimental medicine (PhD). During his PhD training he held a research fellowship role in hematology at the Mayo Clinic in Rochester, Minnesota, USA.

He is working as a clinician at the Amyloidosis Research and Treatment Center in Pavia, Italy and as an Assistant Professor in Clinical Chemistry at the University of Pavia. He is a member of a number of local and international scientific societies, including the Italian Society for Amyloidosis (currently Treasurer) and the International Society of Amyloidosis.

Dr Milani also serves as a reviewer for multiple internationally recognized journals and has authored over 110 publications focusing on the outcome prediction, treatment approaches, and diagnosis of cardiac amyloidosis.

Financial disclosures
Paolo Milani has received honoraria or consultation fees from Pfizer, Jansen, Siemens, and Prothena.

Dr Roberta Mussinelli

Dr Roberta Mussinelli

Medical Consultant, Fondazione IRCCS Policlinico San Matteo

Dr Mussinelli graduated with honours at University of Pavia in 2011 and subsequently she became a specialist in Internal Medicine at the same University. She obtained the PhD diploma in Intern Medicine and Medical Therapy.

She has been working in the Amyloid Research and Treatment Center of Pavia since 2014, at first during her residency and then as a consultant from 2017. She is responsible for the cardiovascular evaluation of patients with amyloidosis. Her main research focus is the diagnosis and treatment of the different forms of cardiac amyloidosis and the management of the supportive therapy.

In 2017, she spent 6 months at the Amyloid Center at Boston University School of Medicine as a visiting researcher.

Since 2014 she is part of the International Society of Amyloidosis and a member of the Italian Society of Internal Medicine (SIMI) and American Society of Ecocardiography (ASE).

She is Sub-investigator for several ongoing clinical trials of novel drugs for the treatment of hereditary amyloidosis, wild-type TTR amyloidosis and AL amyloidosis. She has co-authored over 20 papers in international journals.

Financial disclosures
Roberta Mussinelli has participated in a company sponsored speaker bureau for Pfizer, SOBI and Alnylam.

Mrs Christine Chiti

Mrs Christine Chiti

Clinical TTR nurse specialist, National Amyloidosis Centre, Royal Free Hospital, London, UK

Christine Chiti, RGN, Renal and ATTR Specialist Nurse, is currently providing comprehensive services to a wide variety of patients with ATTR Amyloidosis in the National Amyloidosis Centre. She has embarked on a new journey as a TTR specialist nurse in the National Amyloidosis Centre. She graduated as a Registered General Nurse in August 2000 with a Diploma in Nursing from Kitwe Central Hospital, Zambia.

Chiti has almost 24 years of nursing experience and worked in paediatrics and paediatric critical care, trauma, and neurology at Royal National Orthopaedic hospital, Fresenius dialysis Centres and Bart’s hospital. These posts have afforded her the opportunity to develop a well-rounded skill set with a multidisciplinary team. She firmly believes that a holistic approach is the effective way in providing quality care to patients with long term conditions.

Disclosures
Christine Chiti has participated in company sponsored speaker bureaus with Alnylam Therapeutics, Pfizer, and Astra Zeneca.