American Academy of Neurology

AAN 2023: A unique opportunity to connect with the Global Neurology Community

Vanco Vlastimil (��ֳ� S.A.) — Fri, 21 Apr 2023 11:45:47 +0000

AAN 2023: A unique opportunity to connect with the Global Neurology Community

Donatello Crocetta, ��ֳ� Rare Disease Organization

Vanco Vlastimi… Fri 21/04/2023 - 13:45

Medical meetings and congresses like the American Academy of Neurology Annual Meeting provide a unique forum for the latest advances in research, medicine, and clinical practice to be, shared, presented, and discussed.

The massively varied progamme of scientific sessions, posters and symposia are an important way for delegates to stay up-to-date on the latest developments in the field. Because of the cross-functional and cross-cultural composition of attendees from around the world, there are often lively discussions and debates which can lead to new and unique perspectives being shared. These viewpoints can stimulate new approaches, important advances and, potentially, exciting improvements in patient care and treatment outcomes. They can also be a genesis for new collaborations and partnerships alongside opportunities for enriching professional development.

This spirit of collaboration, and a willingness to embrace perspectives outside our own experience, is crucial for advancing research and improving patient care. At ��ֳ�, we believe strongly that the best way to make a difference is to be part of the discussion. By working together as one community, our voice can be immeasurably amplified. Indeed, I believe by embracing this partnership approach we can make significant strides in better understanding complex neurological conditions, identifying new approaches to delivering improved patient outcomes.

Because we are focused on delivering differentiated patient value across multiple neurological therapy areas, the AAN meeting is a natural environment for ��ֳ� to connect with and learn from delegates from around world. We are united in our passion to better understand disease mechanisms which underpin the complex neurological diseases faced by patients. These insights help us to identify and develop new drug targets and therapies, and design clinical trials which resonate with the real-world outcomes patients value with the aim of improving patients' quality of life.

With our proud heritage in neurology, we’re excited to be sharing a diverse scientific programme at this year’s AAN congress, as we continue to pioneer new research into debilitating neurological conditions such as epilepsy and Parkinson’s disease, with the goal of improving patient outcomes and experiences. We’re also focusing our efforts toward communities living with rare diseases such as myasthenia gravis, autoimmune encephalitis and rare forms of epilepsy such as Dravet syndrome and Lennox-Gastaut syndrome. While individual rare diseases are uncommon, collectively they affect a significant portion of the population.

By taking a multi-faceted approach that focuses on increasing awareness and education, supporting patient advocacy, promoting research and innovation, improving access to care, and facilitating collaboration, we can work towards improving care for patients with rare diseases. Which is why, I’m so excited about the opportunity to connect with the community at this year’s AAN meeting!

Of course, there is still much work to be done. However, progress being made in rare disease research is inspiring, and continues to progress at pace. With continued research and open collaboration there is reason to believe both rare and more common diseases can be better understood and more effectively treated in the future.

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��ֳ� at AAN 2021: A patient-led analysis on the experience of living with MG

eCMSadmin — Mon, 19 Apr 2021 09:00:00 +0000

��ֳ� at AAN 2021: A patient-led analysis on the experience of living with MG

Kenza Seddik, Rare Disease Patient Experience Lead

eCMSadmin Mon 19/04/2021 - 11:00

At ��ֳ� we put patients at the heart of everything we do. In order to improve outcomes for patients, we need a deep understanding of their current experience of living with their condition, especially in rare diseases such as MG. In collaboration with my colleague Veronica Porkess, I am thrilled that we have been able to collaborate with patients to present a detailed patient-led analysis of the lived experience of MG as a poster at this year’s American Academy of Neurology (AAN) annual meeting.

The journey began 2 years ago, when we started to collect insights about the lived experience with MG, including hearing patients’ stories directly from them. We soon realised that the published literature did not fully reflect the day-to-day reality of living with MG.

In order to better understand the lived experience we partnered with an international patient council comprised of nine local/national patient advocates in seven countries throughout Europe and the U.S. These experts identified the most relevant of the 114 insights previously gathered from multiple sources, with each council member representing the experiences of fellow patients in their country. Finally, we worked with two members of the patient council, Nancy Law (of the Myasthenia Gravis Foundation of America) and Kelly Davio, to consolidate the feedback and develop this patient-led analysis into a publication.

This process reflects ��ֳ�’s vision of being “Inspired by patients, driven by science”, as well as our determination to raise the voices of patients with rare diseases.

We hope this analysis provides pivotal insights into the reality of living with MG and that this will support healthcare professionals to improve understanding and management of this rare and often debilitating neuromuscular disease.

The focus on patient perspectives at AAN will continue during a ��ֳ�-sponsored virtual symposium “Journey to the Cause”. In this session James F. Howard, Jr., of the University of North Carolina at Chapel Hill and Saiju Jacob, from the University Hospitals Birmingham, UK will trace the clinical features of rare autoimmune neuromuscular diseases, including MG, back to their origins in the immune system, and one of the abstract authors, Nancy Law, will share her first-hand experience of living with the disease. The symposium will be hosted virtually on Tuesday, April 20 at 9:00-10:00 a.m. EST.

With over 20 years of heritage in the research and development of drugs in neurological disorders, we are bringing the same committed approach to our work in rare disease. Our goal is to meet the needs of those often left silent, unrecognized, or misunderstood by their rare condition. Understanding firsthand the experience of living with a severe neurological disease, such as MG, is core to our commitment in developing and delivering solutions to help shape individualized treatment and care for patients.

Thank you to all members of the patient council who contributed to the analysis, our patient authors (Kelly Davio and Nancy Law), as well as Melissa Blunck (��ֳ� Pharma) and Dawn Lobban (Envision Pharma Group) whose tireless efforts made this possible.

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Comment:

Posted by Rachael Conway, 26 April 2021

Brilliant Kenza - you are a constant inspiration and source of energy in keeping us focused on identifying and meeting the unmet needs of individual patients :-)

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��ֳ� @ AAN 2021: Embracing digital knowledge sharing and virtual engagement at premier global neurology congress

eCMSadmin — Fri, 16 Apr 2021 00:00:00 +0000

��ֳ� @ AAN 2021: Embracing digital knowledge sharing and virtual engagement at premier global neurology congress

Jim Baxter, Patient Value Neurology & Europe/International Solutions

eCMSadmin Fri 16/04/2021 - 02:00

Like a significant proportion of the word’s neurology community, ��ֳ� colleagues from around the world are excited to be participating in the 73rd American Academy of Neurology (AAN) Annual Meeting which, this year, takes place in a wholly digital setting.

Alongside posters spanning epilepsy and Parkinson’s Disease, we’re especially proud to be presenting a co-authored patient-led poster which aims to shed additional light on the day to day experiences of living with generalized myasthenia gravis (gMG). We hope this analysis could provide pivotal insights into the reality of living with gMG and that, in the future, this might support healthcare professionals to improve understanding and management of this rare and often times debilitating neuromuscular disease.

Meetings like AAN provide us with an opportunity to interact with and learn from leaders in Neurology from around the word, and to share our enthusiasm for translating patient insights into unique, disease-modifying solutions that we believe have offer the potential to provide value and transform the patient experience.

��ֳ� will also be hosting a virtual symposium to trace the clinical features of rare autoimmune neuromuscular diseases, such as gMG, back to their origins in the immune system and gain a unique perspective on the lived patient experience. The symposium, which will be hosted virtually on Tuesday 20 April, 09:00-10:00 EST, will be joined by an esteemed faculty including James F. Howard, Jr., The University of North Carolina at Chapel Hill, Saiju Jacob, University Hospitals Birmingham, UK and Nancy Law, Myasthenia Gravis Foundation of America.

Although the increasingly virtual nature of international scientific meetings presents new and unique challenges, we share the passion and commitment of the AAN for this new digital forum. In line with our wider digital business transformation ambition we are embracing multi-channel platforms and technology to ensure we can continue to share and engage with the Neurology community. Together, we are united in our ambition to improve the lives of people living with neurological diseases – whether in a physical or virtual setting.

Follow us on social media (Twitter, LinkedIn, Instagram and Facebook) to stay informed about our ‘Inspired by Patients, Driven by Science’ approach and our commitment to delivering improved solutions to support patients living with rare and chronic diseases.

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American Academy of Neurology

AAN 2023: A unique opportunity to connect with the Global Neurology Community

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��ֳ� at AAN 2021: A patient-led analysis on the experience of living with MG

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��ֳ� @ AAN 2021: Embracing digital knowledge sharing and virtual engagement at premier global neurology congress

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American Academy of Neurology

AAN 2023: A unique opportunity to connect with the Global Neurology Community

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������ֳ� at AAN 2021: A patient-led analysis on the experience of living with MG

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������ֳ� @ AAN 2021: Embracing digital knowledge sharing and virtual engagement at premier global neurology congress

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��ֳ� at AAN 2021: A patient-led analysis on the experience of living with MG

��ֳ� @ AAN 2021: Embracing digital knowledge sharing and virtual engagement at premier global neurology congress