X4 Pharmaceuticals’ Post

For this Rare Disease Day, I’d like to share a dream with the Rare Disease #Community and imagine a world: 👉 where all newborns are screened for rare and devastating diseases, no matter where they are born, 👉 where families don’t have to face countless consultations before finding the right diagnosis – which is not only painful for them, but also totally inefficient for healthcare systems. I would like to start seeing #decisionmakers acting with the sense of urgency these babies deserve, acting as if every child in need was their own. See more in the video 👇👇👇 #WeWontRest #imagine #rarediseaseday2024 #raredisease #communityhealth #lightupforrare #Awareness #INSD #NeonatalScreeningMatters #INSD #europeanunion #europeanparliament #europeancommission #eu2024be

🩸💪 Let's make a meaningful impact together! Sickle cell disease affects countless individuals and families, and it's crucial to provide them with the support and resources they need. Whether you're directly impacted by sickle cell disease or want to be a source of support, these resources can be a lifeline. By sharing these resources, you're not only spreading awareness but also extending a helping hand to those in need. Let's come together and create a supportive community for individuals and families affected by sickle cell disease. Share this list far and wide, and let's make a positive impact! ❤️🌟 #SickleCellResources #SupportAndEducate #SickleCellWarriorsUnite #InMemoryOfAnwarSeanHall #SickleCellAwarenessHero #MississippiSickleCellFoundation #SickleCell101 #SC101 #MorganLegacyGroup #AdvocacyConsulting #RaisingAwarenessForSCD #SeptemberIsSickleCellAwarenessMonth

Today we spotlight on the strength and courage of those facing rare diseases. Every individual impacted by a rare condition has their own unique journey, yet together, form a powerful community united by hope and determination. On this Rare Disease Day, we raise awareness about the challenges faced by patients and their caregivers, advocates, and families. It is a day to celebrate victories, big and small. We acknowledge the ongoing efforts in the pursuit of better treatments and cures. By continuing to spread awareness, we have the power to foster compassion, inspire reach, and drive tangible change. #RareDiseaseDay2024 #RareDiseaseAwareness #HopeForACure #RareDiseaseCommunity #Duchenne #DuchenneMuscularDystrophy #DuchenneAwareness #MuscularDystrophy #CureDuchenne #RareDiseaseCommunity #Mdawareness

Leprosy, an ancient disease that dates back 4,000 years, is often misunderstood as a disease of the past. However, the reality is that around 200,000 people are diagnosed with leprosy each year, and millions more are believed to have the disease without diagnosis. Tragically, many individuals are left with lifelong disabilities due to delayed treatment. Communities must understand the ongoing impact of leprosy and support efforts to improve early detection and treatment. To learn more about leprosy, visit: https://lnkd.in/grRaYgAy #LeprosyAwareness #Healthcare

⚡ #ParkinsonsAwarenessMonth is coming to an end, a month dedicated to raising awareness for Parkinson’s Disease (PD), the people affected by it, and treatment methods. PD affects more than 1.2 million people in Europe, but many misconceptions are still prevailing – here are some popular myths about PD: https://lnkd.in/dUT9AHgb #BSCEMEA #DeepBrainStimulation #DBS

World congenital disease is observed on 14 February globally. It aims to spread awareness about the disease. This day is celebrated with the aim of spreading awareness and educating people about congenital diseases. Congenital heart disease is a blanket term for a variety of birth defects that impair the heart's ability to function normally. When the heart or blood vessels close to the heart don't develop normally before birth, a congenital heart defect results. These heart defects' precise origin is still a mystery. As we commemorate World Congenital Heart Defect Awareness Day, let us not only raise awareness but also reaffirm our commitment to supporting those affected by CHD. Let us educate ourselves and others, advocate for change, and stand in solidarity with individuals and families facing this silent struggle. Together, we can turn the tide against CHD, ensuring that every heart – no matter how broken – is embraced with love, understanding, and hope. #WorldCongenitalDisease #CongenitalHeartDefect #awareness #chd #hearthealth #healthcare #support #education #advocacy #solidarity #hope

Today, on Rare Disease Day, let's unite in raising awareness and support for those battling uncommon conditions. Every individual's journey is unique, but together, we can make a difference. #rarediseaseday2024 #SupportRare" #raredisease #neocubes #neoplus #awareness

May is #NECawareness Month! NEC (necrotizing enterocolitis) is a leading cause of infant death, impacting thousands of babies every year. It is a devastating intestinal disease that primarily affects babies born prematurely or with a medical complication. The NEC Society is working with patient-families and experts from around the world to #preventNEC and improve outcomes for the most vulnerable infants at risk of NEC. Join us & support us! https://lnkd.in/dt9Bgx3d

Leprosy, an ancient disease that dates back 4,000 years, is often misunderstood as a disease of the past. However, the reality is that around 200,000 people are diagnosed with leprosy each year, and millions more are believed to have the disease without diagnosis. Tragically, many individuals are left with lifelong disabilities due to delayed treatment. Communities must understand the ongoing impact of leprosy and support efforts to improve early detection and treatment. To learn more about leprosy, visit https://bit.ly/3SyY6Gu. #LeprosyAwareness #Healthcare