MG Awareness Month

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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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.

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MG Awareness Month Myasthenia Gravis Rare Disease

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��ֳ� Celebrates Patient Strength During MG Awareness Month

eCMSadmin — Tue, 08 Jun 2021 00:00:00 +0000

��ֳ� Celebrates Patient Strength During MG Awareness Month

Donatello Crocetta, ��ֳ� Rare Disease Organization

eCMSadmin Tue 08/06/2021 - 02:00

At ��ֳ�, we are committed to developing a deep understanding of patients and their lived experiences, especially within rare diseases like myasthenia gravis (MG).

Each June, MG Awareness Month is another opportunity for us to listen and learn from people living with MG, their loved ones, advocacy organizations and healthcare providers. MG is a rare, chronic, auto-immune, neuromuscular disease associated with muscle weakness and is often referred to as the ‘snowflake’ disease. The disease differs widely from person to person, making no two journeys alike, similar to how each snowflake is unique.

Two of our MG patient ambassadors, Dale and Greg, have shared their personal stories of strength with us and their passion to not give up.

More than five years ago, Dale first started experiencing MG-related symptoms. After meeting with a neurologist who ran a series of tests, including an electromyography (EMG) and bloodwork, Dale was diagnosed with MG in 2015. Years later, Dale still experiences MG symptoms. Despite his diagnosis and having limited energy, Dale maintains a positive mindset and enjoys spending quality time with his family.

However, no two MG stories are alike. Greg’s journey with MG was very different from Dale’s. Greg first began experiencing slurred speech, another MG-related symptom, in the summer of 2002. He was then diagnosed with the condition later that year. Despite meeting with multiple doctors, Greg was left without a confirmed diagnosis. Finally, Greg was diagnosed with MG by his neurologist, and thus began a trusted 20-year relationship between doctor and patient. Although he often experiences weakness in his limbs, Greg still makes an effort to be active daily by taking walks with his dog, even if it’s just for a short distance.

It’s people like Dale and Greg who continue to fuel our ambition to further advance treatment options and support the MG patient community.

��ֳ� MG Patient Ambassadors, Dale and Greg

This June, ��ֳ� will be encouraging our employees (and their families) to design and share their most creative ‘snowflake’ interpretation. In the spirit of this year’s MG Awareness Month theme, “Turning Awareness into Action,” we will choose one winner to select an MG organization to receive a charitable donation from ��ֳ�.

��ֳ� is proud to stand with the MG patient community all year long, not just during MG Awareness Month. The ��ֳ� team has also helped connect the Myasthenia Gravis Foundation of America (MGFA) with global partners to build a larger, more diverse platform and help bring new opportunities to the community, through digital innovation, patient disease state awareness, Rare Disease Advisory Councils, and connecting industry peers. MGFA named ��ֳ� as Corporate Partner of the Year in April for these ongoing efforts in support of our shared mission to help patients and their families manage the difficulties of living with MG.

We hope you will join us in celebrating the strength and perseverance of the MG community this month.

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Myasthenia Gravis Rare Disease MGFA MG Awareness Month

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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.

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MG Myasthenia Gravis MG Awareness Month

Comment:

Posted by Nathalie Rowell, 20 June 2020

Excellent article, Chris.

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MG Awareness Month

Turning awareness into action for Myasthenia Gravis Awareness Month

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

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��ֳ� Celebrates Patient Strength During MG Awareness Month

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Celebrating MG Awareness Month, Together From Afar

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MG Awareness Month

Turning awareness into action for Myasthenia Gravis Awareness Month

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

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������ֳ� Celebrates Patient Strength During MG Awareness Month

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Celebrating MG Awareness Month, Together From Afar

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��ֳ� Celebrates Patient Strength During MG Awareness Month