Less than 50 days till Rare Disease Day, mark your calendars! 📅
At Cisiv, this day is particularly important to us as rare diseases present unique challenges in the realm of medical research and treatment. Due to the scarcity of patients and limited data available from traditional clinical trials, understanding and developing effective treatments for these conditions require a different approach.
Real-world evidence (RWE) plays a pivotal role in addressing these challenges and advancing our knowledge in the field of rare diseases. We believe comprehensive evidence, encompassing real-world data, is crucial for any treatment, particularly in the case of rare diseases.
It is imperative for the industry to consistently expand the utilisation of this comprehensive evidence to expedite the delivery of life-saving therapies to patients.
Rare Disease Day 👏
#raredisease #realworldevidence #realworlddata #rwe
You loved the first! Here’s another! 💗
Introducing our next poster to mark 50 days until Rare Disease Day, designed to keep the rare disease community at its core! Download it here: https://lnkd.in/efRbDevB
🌟 Let's shine a light on rare conditions and stand together in unity. 🤝 If you'd like to translate it into your language, drop us an email at: [email protected] and we'll handle the rest!
🌍 Join us in lighting up the world with awareness, hang the poster up in your houses and offices now!
.
.
#RareDiseaseDay #Awareness #ShareYourColours #LightUpForRare
Disabled Litigation Partner
7moIt has become increasingly difficult to get vital medications our drs. have prescribed: drugs we have been dispensed in numerous cases over 20 years. Including without controversy, regularly monitored. Especially for Rare Diseases, though including levothyroxine while hospitalized for autoimmune hypothyroidism. Pharmacies are informed nothing by their suppliers, Just "on back order"--with no explanation, incl. when the drugs WILL be available. Drugs have been discontinued w/ no explanation. With medicine never investigating their potent, unique benefits. Again, esp w/ rare diseases. the FDA repeatedly refuses to ever list many "medically necessary drugs" for "serious: disease: The threshold that triggers the FDA's obligation to list the drug on its shortages list and to intervene however tenable to thwart, mitigate, expedite resolution of a crisis. As is, pts. time/again have no recourse.