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!

solutions

220 Likes

Understanding More About the Lived Experiences of People Living with Myasthenia Gravis

Vanco Vlastimil (��ֳ� S.A.) — Tue, 27 Jun 2023 04:00:00 +0000

Understanding More About the Lived Experiences of People Living with Myasthenia Gravis

Daphne Teo, US Communications

Vanco Vlastimi… Tue 27/06/2023 - 06:00

At ��ֳ�, our work is rooted in a culture of dialogue, collaboration, and respect. These tenets allow us to forge bonds with the people we serve and those who know their challenges best, ensuring that our work can have the greatest possible impact.

During Myasthenia Gravis Awareness Month, ��ֳ� recommits to addressing the challenges of the myasthenia gravis community by continuing to invest in meaningful partnerships to deliver valuable solutions for the patients we serve.

Part of that partnership and collaboration for ��ֳ� is showing up: being there to listen to patients, to not only learn more about them but also from them. ��ֳ� is there to amplify the voices of patients, so that there can be greater understanding and awareness for those living with rare conditions, such as myasthenia gravis.

Kimberly Moran, Ph.D., Head of U.S. Rare Disease, recently had a chance to have a Q&A with Alexis Rodriguez, who was diagnosed with myasthenia gravis 25 years ago. She listened to Alexis about how the journey living with a rare disease is complex and how every patient is different. They discussed how people living with myasthenia gravis are seeking more resources and education on this rare condition.

solutions

Myasthenia Gravis Rare Disease Patients

390 Likes

Harnessing knowledge and partnership to improve lives of people living with Myasthenia Gravis

Vanco Vlastimil (��ֳ� S.A.) — Thu, 01 Jun 2023 13:22:10 +0000

Harnessing knowledge and partnership to improve lives of people living with Myasthenia Gravis

Donatello Crocetta, ��ֳ� Rare Disease Organization

Vanco Vlastimi… Thu 01/06/2023 - 15:22

In MG, increasing the evidence and knowledge will help bring better solutions for those living with this debilitating rare disease.

Like many individuals living with a rare disease, people with Myasthenia Gravis (MG) can experience high medical and non-medical needs, presenting challenges for themselves, their families, healthcare systems and wider society.

As a rare disease, knowledge about MG amongst the general population is low. Compared to more common illnesses, people are less likely to know someone living with MG. The same is often true amongst non-specialist clinicians, many of whom may never treat an MG patient during their career. Because of this, wide-spread understanding about this rare neuromuscular disease is limited, with relatively few centres of excellence and around the world compared to other spheres of specialty medicine.

At ��ֳ�, we strongly believe in contributing to and improving the evidence base for MG, improving the knowledge and understanding of this rare and debilitating disease. For us, this is a fundamental foundation in being able to make changes that address the unmet needs of people living with MG, and ultimately, helping them to live the life to which they aspire.

An important part of achieving this goal is partnering with the MG community to listen to and elevate their voice. Whether though educational initiatives, participation in medical, scientific or advocacy meetings or engaging directly with patient and clinical experts, we are extremely proud of our record of working with the MG community.

Over the last eight years, we have gathered evidence and insights about this rare disease in partnership with the MG community. This includes pioneering published research highlighting the real-world lived experiences of patients with MG across the globe, alongside perspectives of the global MG community on the barriers, challenges and opportunities to improve awareness, diagnosis and management of MG.

This research has flagged insights which have helped shape the way in which we engage and communicate with the community, as well as broadened our understanding about an MG patients’ journey. For example, MG patients reported contracting over 14 different types of specialists – including neurologists, primary care physicians and ophthalmologists - at some point in their care. It has also helped us to appreciate the extent to which, beyond managing the symptoms of the disease, living with MG can impact factors such as employment and early retirement; assistance of a caregiver for daily living and Quality of Life.

During this MG Awareness Month, we excited to be able to shine a spotlight on some of the activities taking place around the world to raise awareness about MG. We are proud to be able to demonstrate the depth and breadth of knowledge which has helped to shape our research and decision making, and we are excited to continue to share more important findings and insights that we hope might contribute to transforming patients’ lives.

solutions

MG Awareness Month Myasthenia Gravis Rare Disease

438 Likes

Collaborating with the patient community, for the patient community, in MG

Vandenbruaene Nathalie — Mon, 28 Feb 2022 08:08:06 +0000

Collaborating with the patient community, for the patient community, in MG

Sophie Housiaux, Medical Patient Engagement, Rare Disease Organization

Vandenbruaene … Mon 28/02/2022 - 09:08

‘Collaborating for the myasthenia gravis patient community’: The full patient-led report can be read here.

In recognition of Rare Disease Day 2022, we are pleased to launch our new report ‘Collaborating for the myasthenia gravis community’. Created in partnership with patient organization leaders across Europe, this is a community-led call-to-action to identify, validate and initiate action to address the most urgent needs facing those living with myasthenia gravis (MG).

Working in close collaboration with the MG patient community
Patients are at the center of everything we do at ��ֳ�, so their voices must be front and center of any initiative. This report is the result of a long-lasting partnership with patient advocates in Europe, grounded in the framework of the EURORDIS-coordinated Rare 2030, where we listened to the real-life MG experience and, as part of a dedicated MG Patient Experience Expert Roundtable, set forth actions to tackle the most pressing issues uncovered.

I would like to thank each of the MG patient advocates for your invaluable contribution to this report, which is only possible due to your efforts and expertise.

Looking ahead
This report is just the start — uniting advocates and experts from across Europe to issue a rallying cry to those who make decisions about MG management and treatment. In the words of the report’s Foreword co-authors, Raquel Pardo, AMES, Spain and Johan Voerman, Spierziekten Nederland, the Netherlands, “Collaboration must be the cornerstone of any effort to improve life with MG.” The time is now to take action. We hope that, upon reading this report, you are inspired to join us.

The findings
You can read the full patient-led report here to find out more about the key findings and calls-to-action.

solutions

Rare Diseases Myasthenia Gravis

Comment:

Posted by D change, 20 November 2023

Superb, what a weblog it is! This web site gives helpful data to us, keep it up.

Comment:

Posted by d-change.net, 21 November 2023

It's nearly impossible to find experienced people on this topic, but you sound like you know what you're talking
about! Thanks

720 Likes

��ֳ� 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.

about ucb

AAN 2021 Myasthenia Gravis MG American Academy of Neurology AANEM

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 :-)

778 Likes

Celebrating MG Awareness Month, Together From Afar

eCMSadmin — Tue, 16 Jun 2020 00:00:00 +0000

Celebrating MG Awareness Month, Together From Afar

Chris Clark, Patient Value Neurology & Europe/International Solutions

eCMSadmin Tue 16/06/2020 - 02:00

Although this June may look and feel different from years past, we’re just as excited to spread awareness together with the myasthenia gravis (MG) community in celebration of Myasthenia Gravis (MG) Awareness Month. In light of the impact coronavirus is having on people around the world, especially people with MG who may be immunocompromised, we’re looking forward to connecting and celebrating in a virtual way.

According to a study conducted by the Myasthenia Gravis Foundation of America (MGFA), this chronic, autoimmune condition can impact a person’s life in many ways. MG is a neuromuscular condition that causes the body’s immune system to mistakenly target the connection between the nerves and muscles, resulting in symptoms such as drooping eyelids and double vision, as well as severe muscular weakness that can result in life-threatening failure of the muscles that help with swallowing and respiration. For those affected, these MG symptoms can regularly interfere with aspects of everyday life.

This month, we have an opportunity to elevate the voices and needs of people with MG who remind us each day that our collective efforts can directly impact the everyday lives of MG patients – especially during times when immunocompromised individuals can face even more challenges than usual.

At ��ֳ�, we are always focused on delivering value for the patient populations we serve. Last month, ��ֳ� finalized the acquisition of Ra Pharmaceuticals, a move that helps strengthen our neurology and immunology efforts and advances our progress in treating a broad population of people living with MG. Our newly expanded portfolio allows us to expand our research capabilities, accelerate development of new medicines and hopefully make a bigger impact within the MG community.

We hope you will join us in virtually celebrating MG Awareness Month. Consider taking part in raising awareness and empowering the MG community by supporting the activities of the MG community in your country or sharing your own experiences via social media.

For more information and resources about MG, read our infographic here or visit myasthenia.org.

solutions

MG Myasthenia Gravis MG Awareness Month

Comment:

Posted by Nathalie Rowell, 20 June 2020

Excellent article, Chris.

639 Likes

Myasthenia Gravis

Turning awareness into action for Myasthenia Gravis Awareness Month

Leave a Comment

Understanding More About the Lived Experiences of People Living with Myasthenia Gravis

Leave a Comment

Harnessing knowledge and partnership to improve lives of people living with Myasthenia Gravis

Leave a Comment

Collaborating with the patient community, for the patient community, in MG

Leave a Comment

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

Leave a Comment

Celebrating MG Awareness Month, Together From Afar

Leave a Comment

Myasthenia Gravis

Turning awareness into action for Myasthenia Gravis Awareness Month

Leave a Comment

Understanding More About the Lived Experiences of People Living with Myasthenia Gravis

Leave a Comment

Harnessing knowledge and partnership to improve lives of people living with Myasthenia Gravis

Leave a Comment

Collaborating with the patient community, for the patient community, in MG

Leave a Comment

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

Leave a Comment

Celebrating MG Awareness Month, Together From Afar

Leave a Comment

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