Novartis Gene Therapies’ Post

Today, in honor of #RareDiseaseDay, we share our colors to shed light on the challenges faced by brave children and their families affected by Hemophilia A, a rare bleeding disorder that primarily affects young children. Did you know that this condition occurs when a child's blood lacks enough clotting factor VIII, leading to excessive bleeding and difficulty stopping it? I deeply admire my niece and her husband, who welcomed their beautiful son to the world on February 27, 2022, and soon learned that he had a severe form of Hemophilia A, which means he has less than 1% factor VIII. People with severe Hemophilia A experience bleeding following an injury and may have frequent spontaneous bleeding episodes, often into their joints and muscles. Many males with severe Hemophilia are diagnosed due to bleeding after circumcision. Let's come together and make a difference by spreading awareness, advocating for research advancements, and providing support. Join us in supporting the #PediatricHemophiliaA and #RareDisease community by clicking the link in the comments for more information. Together, we can help empower and support these families, and advocate for the research advancements that they need. #BloodDisorder #BleedingDisorder #HemophiliaAwareness #ChildrensHealth #ResearchAdvancements #SupportAndEmpowerment #TogetherWeCanMakeADifference #parexelwithheart (Parexel)

A strong support system is invaluable in IBD management, at all times of your life but especially when you’re newly diagnosed. That support could come from family members, friends, significant others, colleagues, and others in the IBD community. Growing up with Crohn’s disease, I’ve been blessed with an incredible support system, which has carried me through more tough times than I can count. I understand that some people may not have the support they need. I’m here to remind you that you are not alone - you have literally millions of people just like you out there in the world. Work with your doctors, find your local IBD tribe, and get connected to that support system! #worldibdday #worldibdday2024 #ibdawareness #crohnsawareness #ibd #ulcerativecolitisawareness #crohnsdisease #ulcerativecolitis #education #cureibd #solidarity #support #community #findyourtribe

This MG Awareness Month, #TeamUCB marks the strength of the myasthenia gravis community. We amplify the voices of patients and their caregivers living with this rare, chronic neuromuscular disease. It was exciting to accompany Kathi to the TV set of Behind The Mystery: Myasthenia Gravis. It really was an immersive experience to be in-person and in-studio on the set of Behind The Mystery: Myasthenia Gravis. We take a moment to honor the lived experiences of patients and caregivers. No one is truly alone in facing the challenges of this rare disease. Join us in increasing support and advocacy for people living with myasthenia gravis. AND no, we did not plan that color coordination. #MGstrong #MG #myastheniagravis #raredisease #BehindTheMystery #RareDiseaseAwareness

To spotlight the people living with warm autoimmune hemolytic anemia (wAIHA) and autoimmune hemolytic anemia (AIHA) on #AIHAAwarenessDay, we’re proud to support organizations like wAIHA Warriors.      Together, we aim to not only bring awareness to wAIHA, which accounts for 70 – 80% of all adult AIHA cases, but to provide support and resources for people living with the disease and their caregivers: https://bit.ly/3Vo919t       #JNJImmunology   

October is Eczema Awareness Month. The National Eczema Association's purpose for this month is to educate on the affect eczema has on individuals, while reducing stigma. Approximately 1 in 10 people will develop eczema sometime in their life. Though it often develops in childhood, 1 in 4 adults with eczema report initial onset of symptoms as adults. Eczema goes beyond just itchy skin and can affect all areas of an individual's life, which is why managing itching is important. Make an appointment with a DermPA™ if you think you have eczema for diagnosis and treatment options. #DermPA #SDPA #dermPAsforDermPAs #eczema #eczematreatment #eczemaawareness #atopicdermatitis #eczemaondisplay

🩸 **World Hemophilia Day 2024** 🌍 Today, we stand together to raise awareness for hemophilia and other inherited bleeding disorders. It's a day to connect with the global community and foster understanding about the challenges faced by those living with these conditions. Let's unite in support and advocacy to improve care and treatment worldwide. 💉 **#WorldHemophiliaDay** is more than just a hashtag—it's a movement. A movement towards better health, more comprehensive care, and a brighter future for the millions affected. 🤝 Join and 🔗 Learn more, get involved, and let's create a wave of change. Because every drop of blood counts. #HemophiliaAwareness #TogetherWeAreStronger

Often misdiagnosed as #parkinsons, essential tremor is found in about 10 million Americans according to The International Essential Tremor Foundation while PD can be found in 500,000 Americans. Tune in this week to learn about the difference between essential tremor and PD. If you or a loved one are experiencing any of the symptoms talked about in this video, speak with your physician for more information on diagnosis. You can also visit www.essentialtremor.org or visit APDA CT at www.apdaparkinson.org for more #Resources. #abccentralct #tuesdaytipswithtaylor #AwarenessPost #essentialtremor

Join us in raising awareness on World Parkinson’s Day! 💙 Let's come together to support those living with Parkinson's disease and their families. Did you know that 1 in 37 people in the UK will be diagnosed with Parkinson's in their lifetime? Let's stand together to support those living with this condition and their families. Together, we can make a difference! #WorldParkinsonsDay #ParkinsonsAwareness #SupportCommunity #Healthcare #SupportForParkinsons #HealthAwareness #HealthcareHeroes #RaiseAwareness #NeurologicalDisorder #EndParkinsons #CommunitySupport #SecureHealthcareSolutions

October is Eczema Awareness Month. The National Eczema Association's purpose for this month is to educate on the affect eczema has on individuals, while reducing stigma. Approximately 1 in 10 people will develop eczema sometime in their life. Though it often develops in childhood, 1 in 4 adults with eczema report initial onset of symptoms as adults. Eczema goes beyond just itchy skin and can affect all areas of an individual's life, which is why managing itching is important. Make an appointment with a DermPA™ if you think you have eczema for diagnosis and treatment options. #DermPA #SDPA #dermPAsforDermPAs #eczema #eczematreatment #eczemaawareness #atopicdermatitis #eczemaondisplay

March is #NMOAwarenessMonth and as a proud ambassador of The Sumaira Foundation, I'm joining my tribe in raising awareness about this disease called neuromyelitis optica spectrum disorder (NMOSD). NMOSD can cause blindness in one or both eyes, weakness or paralysis in the legs or arms, and painful spasms. It also can cause loss of sensation, uncontrollable vomiting and hiccups, and bladder or bowel problems from spinal cord damage. Relapses need to be treated aggressively to prevent long-term disability. Relapse prevention is crucial and achieved with long-term immunosuppression. As global ambassadors, patients, and caregivers we are #strongertogether! Sumaira Ahmed Leda Bresnov Elena Damiani Guillaume Molinier Letitia Annamalay Bérengère Doyere Arif Khan Sanja V. Gluscevic, MD 🧠🧪📂 #NMOSD #raredisease #rarediseaseday2024 #patientadvocacy #10yearsofTSF