National Organization for Rare Disorders’ Post

Fantastic work from the NIHR (National Institute for Health and Care Research) capturing, for the first time, research on #rarediseases taking place across the UK and the source of funding -which from experience cannot have been an easy endeavour! At Impact, we have always emphasized the importance of collaboration and information sharing in this critical area to raise awareness and improve the quality of life of those affected. We have been fortunate to work on many market research projects related to rare diseases, some of which have been shared (mostly sponsored by charities and PAGs), while others have not due to commercial sensitivities. Don't forget that it's #rarediseaseday on February 29, 2024. This is a great opportunity to encourage everyone to share information and collaborate (where appropriate and allowed, of course!). We hope that greater collaboration across industry silos, as demonstrated in this report, will help support and strengthen research into rare diseases. #mrx #pharma #healthcareheroes #medicalinnovation #healthcareadvances

Multiple Myeloma Awareness Month: Raising Awareness, Sharing Stories With #MyelomaActionMonth: This initiative aims to raise worldwide awareness of the disease while trying to strengthen the connection between members of the multiple myeloma community. #finance #pharmacy #lifesciences

X marks the “not”. As in “not disease”. RRx-001 (nibrozetone) donates the x in its name to x-out several pathologic mechanisms for hopefully better health not disease. Read this blog post here: https://bit.ly/3VF43oS

🩸 Discover the life-saving benefits of plasma-derived medicinal products. The plasma collected in blood banks is sent to fractionation centres to produce medicines like Immunoglobulins, albumin, and clotting factors. These medicines go through stringent quality checks before being released into the market. PDMPs are life-saving medicines needed by patients with Hemophilia, bleeding disorders, and immune deficiency. All these are possible due to voluntary donors who donate blood and plasma. Take action today to support patients in need! 💪 #PlasmaTherapy #DonatePlasma #SaveLives https://wix.to/xLgFerz #newblogpost

May is Lupus Awareness Month. Together, we are raising global awareness of lupus to increase understanding, advocacy and support for those affected by this life-changing autoimmune disease. Click the link below to read our most recent article concerning lupus nephritis ⤵️ #Lupus #LupusNephritis #AutoimmuneDisease

In this week's #health top stories: PAHO published a guide for managing cardiovascular risks, and J&J extended its initiative donating products for treating intestinal worms. Read for more! #MexicoBusinessNews #MexicoBusiness #WeeklyRoundup

🚨 Crisis Alert! #mRNATherapeutics is facing an #industrydecline 📉 Understand the alarming decline and its impact in our #newblog. 🧬 Let's raise awareness and find solutions together!🤝 Explore the link for a detailed read of the blog! 🔍 👇 https://bit.ly/3UP1bWe

In the critical fight against antimicrobial resistance, the need for innovative solutions has never been more urgent.   The development of antibiotics often comes with significant financial challenges, as these life-saving treatments often don't yield high profits. Non-profit organizations like GARDP are stepping up, leading the charge to drive progress and develop new treatments for drug-resistant infections.   Our efforts are crucial in safeguarding global health, highlighting the importance of supporting research and development in this vital area.   Read more about this pressing issue in Maryn McKenna's insightful article in Nature Portfolio: https://lnkd.in/eAazFKRG #AMR #publichealth #antibioticresistance #researchanddevelopment

There are 300 million people worldwide living with a rare disease. 72% of rare diseases are genetic. 70% of these genetic rare diseases begin in childhood. TPAF supports the #RareDiseaseDay to raise awareness and garner support to improve the quality of life of those affected.   #rare #child #shareyourcolours #organdonation #NGO #Charity #Help #Life #transformation #digitalhealth #primaryheathcare #healthcareforall #mindfulness #pharmaceuticals #mentalhealthawareness #patientexperience #healthcareinnovation #livertransplant #thepravinagarwalfoundation #revenuecycle #healthit #healtheducation #medtech #healthtech #healthsystems #hospitalmanagement #pediatrichealth

Not necessarily good news worthy of a PR, but this is the world we live in!! The incidence of #TSC in the US is 1 in 6000, the highest of any nation in the world. Interesting that #tuberoussclerosis affects 1 in 6000 in the US which also correlates with the most aggressive vaccine schedule in the world. Having direct #livedexperience as a parent/caregiver observing the family history, I have to ask are we turning on a genetic switch here that exacerbates and amplifies the manifestations of tuberous sclerosis and all rare diseases? I am sure other environmental toxins, trauma and other variables involved but when one observes massive amplification in correlation with "aggressive vaccine schedule" and increased family impact from generation to generation, what the 'ell are we doing? Create the beast to feed the beast, then prey on all in the downstream flow? #raredisease TSC Talks Tuberous Sclerosis Association Tuberous Sclerosis Australia (TSA) Tuberous Sclerosis Complex Ireland #tscawareness https://lnkd.in/dEq82mEU