PTC Therapeutics, Inc.’s Post

Today is Global MND Awareness Day, an opportunity to raise awareness and understanding of MND and the impact on those living with MND, their caregivers and communities. Motor neurone disease (MND) is a progressive degenerative disease. It affects the nerves causing muscle weakness and paralysis. Every day, 2 Australians are diagnosed with MND, and every day 2 Australians die from MND. In 90-95% of cases of MND, the cause is unknown. The average life expectancy after diagnosis is 2 to 3 years. We use today to raise awareness of MND and to recognise and honour those living with MND, their caregivers, communities and healthcare professionals that support them. #GlobalMNDawarenessday2024 #MND #royalrehablifeworks

Some suggestions on how we can assist those dealing with Motor Neurone Disease (MND): First and foremost, let's strive to be understanding and empathetic towards individuals affected by MND. They may be facing physical and emotional challenges, so offering a listening ear and a shoulder to lean on can mean a great deal. Practical assistance can also make a significant difference. This could involve helping with daily tasks such as household chores, meal preparation, or running errands. Even small gestures like offering to accompany them to medical appointments or simply spending quality time together can provide valuable support. Additionally, staying informed about MND and its symptoms can help us better understand the needs of those affected. This knowledge enables us to offer more targeted support and advocate for their well-being within our communities. Lastly, let's not forget the importance of self-care for caregivers and loved ones of individuals with MND. It's essential to prioritize their own well-being to ensure they can continue to provide effective support in the long term. Thank you for offering support and compassion to those living with MND. Together, we can make a meaningful difference in their lives.

The United States is facing a syphilis epidemic and alarming rate increases are being tracked across the nation. Reported syphilis cases rose 80% in the U.S. from 2018 to 2022. If left undetected, Syphilis can have long term and devastating health impacts. The good news is that it is preventable and treatable, and Essential Access is working to ensure that everyone, everywhere can get the STI care they need. Our STI Prevention Center is a leading resource for best practices in STI screening, testing, and treatment. To learn more about this valuable resource, visit https://lnkd.in/emGFEm7V

We understand that cystic fibrosis can be an isolating condition for families. The risk of cross-infection means parents of children with CF cannot meet up as easily as they might like, and often miss out on the chance to talk to someone who knows how they feel. That’s why we set up CF Connect: a service where you can speak to a trained volunteer who also has a child with cystic fibrosis. Find out more on our website. ➡️ https://ow.ly/vkff50S87pU #cysticfibrosis #cysticfibrosisscotland #cysticfibrosisawareness #cysticfibrosisuk

It is National Motor Neurone Disease Week🧑🦼 Motor Neurone Disease (MND) is a progressive condition that affects the nerves in the brain and spinal cord. Every day in Australia, two people are diagnosed with MND and two people die from the disease. It is National Motor Neurone Disease Week🧑🦼 Motor Neurone Disease (MND) is a progressive condition that affects the nerves in the brain and spinal cord. Every day in Australia, two people are diagnosed with MND and two people die from the disease. Raising awareness about MND is crucial in reducing stigma, and promoting understanding and support for individuals and families affected by MND. Here are 3 things you may not know about MND: 🔸Currently, there is no cure for MND.  🔸It affects men more frequently than women 🔸Those living with MND can be eligible for NDIS-funded supports MND Australia is the peak body for MND advocacy, awareness and support. Visit their website for more information and support: www.mndaustralia.org.au #MyCareSpace #NationalMotorNeuroneDiseaseWeek #MNDAwareness #MND

Today, we observe World Scleroderma Day, dedicated to raising awareness about this often misunderstood and disabling disease. Scleroderma is a chronic autoimmune disorder that causes the skin and connective tissues to harden and tighten, leading to a range of symptoms and complications. World Scleroderma Day serves as a platform to educate both the public and the medical community about the realities of living with this condition. It's a day to recognize the bravery and resilience of those who face scleroderma every day, navigating its challenges with courage and grace. It's also a call to action, demanding equal treatment and care for people with scleroderma. Let's unite in solidarity with those affected by this disease, advocating for greater awareness, understanding, and support. Together, we can make a difference in the lives of individuals living with scleroderma. #WorldSclerodermaDay #PatientCare #MakingHealthcareSimple #PuttingPatientsFirst #GrowingTogether #Healthcare

Together we can reduce the enormous toll of substance use disorders in the lives of Kansans. Today we visit our sixth signal of change in a series. Signals of change are a clue to how the future might be different. They are something new that's happening today, positive or negative, that helps us imagine how bigger changes might unfold. Signals help us make choices now for the future we want to see. What signals do you see in the substance use disorder (SUD) ecosystem? The site below explores the Reaching Rural Initiative which supports rural practitioners from different backgrounds and communities throughout the country as they advance solutions to address the challenges of substance use in their communities. United to Transform is a targeted statewide project intended to identify means of reducing the enormous toll of substance use disorders in the lives of Kansans. Get connected, view signals we've collected, and share signals you find at unitedtotransform.com.

As we recognize Friedreich ataxia (FA) Awareness Month, I am inspired by the courage and determination of the FA community. FA is a rare and debilitating neuromuscular disorder, with symptoms typically appearing in childhood. I am proud of the work we do at Biogen to advance FA research, support the FA community and bring awareness to the disease. Learn more: https://www.curefa.org/ #FriedreichAtaxia | #FAAwarenessMonth

🧡 March is Multiple Sclerosis Awareness Month! 🧡 Let's shine a light on Multiple Sclerosis, a chronic autoimmune disease impacting the central nervous system. From fatigue to speech difficulties, MS symptoms vary greatly, affecting millions worldwide. This month, let's unite to raise awareness, offer support, and drive research towards a cure. Together, we can make a difference! 💪 #MSAwarenessMonth #EndMS Join us in spreading awareness and support by sharing this post. Together, let's make a difference for those living with MS. 🌟 #fpbrx #focusprescriptionbenefits

Today is HAE day. HAE (Hereditary angioedema) is a rare disorder characterised by recurrent episodes of severe swelling. These attacks can be extremely disabling, painful and in some instances fatal. I have worked with patients, physicians and on products in HAE for a number of years and understand that many in the general medicine do not recognise this condition (as is common with many rare diseases) and as such I believe in supporting any activity that raises awareness. On HAE day I therefore  encourage everyone to participate in all types of activities – physical activities and those helping overall wellbeing. Any activity time can be reported on haeday.org will be converted into steps. #active4HAE #rarediseases #raredisease #massteam