generalized myasthenia gravis

Turning awareness into action for Myasthenia Gravis Awareness Month

Vandenbruaene Nathalie — Wed, 05 Jun 2024 13:28:50 +0000

Turning awareness into action for Myasthenia Gravis Awareness Month

Manuela Maronati, Rare Diseases Europe

Vandenbruaene … Wed 05/06/2024 - 15:28

Every day, over 700,000 people across the globe live with generalized myasthenia gravis (gMG), a rare disease that most people have never even heard of. gMG occurs when the body’s immune system mistakenly attacks the connections between nerves and muscles. It causes weakness in the muscles that control some of our most basic movements, like seeing, walking, talking, breathing and even smiling. The multitude of symptoms contribute to the emotional toll and daily struggles that people living with this disease face.

Despite this, like many rare diseases, there is a lack of wider knowledge around gMG. This is why it’s especially important that we join forces with the gMG community to recognize MG Awareness Month this June and support the movement to “Turn Awareness into Action.” At ��ֳ�, we are committed to driving real change for people living with gMG.

Prioritizing collaboration with patients
In pushing for progress in gMG, early collaboration with the patient community is essential. This collaboration can take many forms – from working with patients to shape clinical trials, to fostering compassionate care and integrating the patient voice in research. Patients are the experts in living with their condition – by drawing on their lived experiences we can ensure that the patient voice is at the heart of our work to help improve treatment and care for those with gMG.

An example of ��ֳ�’s collaboration with the community is our partnership with expert patients to bring the lived experience of gMG to the attention of the medical community with peer-reviewed publications to highlight the real-life experiences of people living with gMG and strengthen the bond between the scientific and MG patient community. In gMG, the patient population is small and knowledge on the disease is limited, meaning amplifying the patient voice is essential to improving outcomes for those living with this often debilitating disease.

Patient quality of life can often be underestimated
gMG is a complex disease with a range of symptoms – as a result, several aspects that impact patient quality of life can often be underestimated, including fatigue, emotional impact, and difficulties in swallowing or speaking. ��ֳ� sought to address this through collaboration with the patient community which culminated in the development of the MG Symptoms PRO tool, which provides a quantifiable means of assessing MG symptoms that are most relevant to patients, which are not included in other PRO measures like physical fatigue, aligning with patients' lived experiences and paving the way for the development of enhanced management strategies.

Innovating to bring MGS-PRO tool to life has been crucial in helping address these issues. By approaching these challenges from a holistic, patient-centered lens, we’ve been able to assess many symptoms that matter to people living with gMG and help understand the impact of gMG on their daily lives.

However, transformational change requires more than innovation alone. We see meaningful progress when there is shared purpose, a unified approach, and ongoing collaboration and dialogue between stakeholders.

At ��ֳ�, we’re focused on reshaping the MG landscape, and recognize that collaboration with the MG community can accelerate that mission. Through listening, learning, and engaging, we’re committed to accelerating the development and access to life-changing treatments for people living with MG, turning awareness into action. Join us in making a difference by getting involved in MG Awareness Month!

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Prioritizing awareness and access for people living with a rare disease

Vanco Vlastimil (��ֳ� S.A.) — Tue, 28 Feb 2023 10:30:46 +0000

Prioritizing awareness and access for people living with a rare disease

Charl van Zyl, EVP Neurology Solutions & Head of Europe/International Markets

Vanco Vlastimi… Tue 28/02/2023 - 11:30

There are 300 million people in the world today living with a rare disease. Over 6,000 rare diseases are characterized by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient-to-patient suffering from the same disease. Almost half of these diseases are neurological, and 90% of rare childhood disorders have major neurological effects.

However, with each rare disease affecting so few people, these conditions are often overlooked. The resulting lack of awareness of rare diseases remains a problem, with up to 90% of these conditions considered serious or life-threatening. In addition, although we have made tremendous progress in advancing innovation for rare diseases, 95% of rare diseases still do not have a treatment option, representing a significant unmet need.

More than ever, it’s essential that attention is prioritized on rare diseases.

This Rare Disease Day, we’re joining the global movement to raise awareness and knowledge about rare diseases. We fully support the mission of this important milestone, promoting equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. For ��ֳ�, these are all driving forces behind our commitment to the rare disease community.

There are so many areas where industry can play a role in helping to create change for people living with rare disease.

Increasing equity for people living with a rare disease in one of our priorities. It’s imperative that those living with a rare disease have equitable access to health, social care, diagnosis, and treatment. As part of our mission to address this, we’re conducting a health economics (HECON) report to better define the burden of illness of generalized myasthenia gravis (gMG) to help address these challenges and help make change for patients.

At ��ֳ�, we strive toward faster clinical trial processes in order to get new treatments out as soon as possible; work on collecting data from rare disease patients so that their “real world” experience is represented and appreciated; involve patient expertise more closely during the development process so we can listen, learn and adapt; plus much more – all with one goal: improving knowledge around these unique conditions while helping relieve some of the pressures they put on individuals, families, healthcare systems, and society alike.

��ֳ� has a growing portfolio – both approved and investigational/early research – in rare diseases including Dravet syndrome, Lennox-Gastaut syndrome, gMG, MOG, TK2d and CDKL5 deficiency disorder, and other rare epilepsies. All these conditions have unique patient populations with their own needs and challenges and will treat them all with the respect and care they deserve.

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Rare Disease Day Patients generalized myasthenia gravis Dravet syndrome Lennox-Gastaut syndrome MOG TK2d CDKL5

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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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AAN gMG generalized myasthenia gravis American Academy of Neurology

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generalized myasthenia gravis

Turning awareness into action for Myasthenia Gravis Awareness Month

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Prioritizing awareness and access for people living with a rare disease

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

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generalized myasthenia gravis

Turning awareness into action for Myasthenia Gravis Awareness Month

Leave a Comment

Prioritizing awareness and access for people living with a rare disease

Leave a Comment

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

Leave a Comment

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