It’s hard to say exactly what impact rare disease awareness has had on our world. What has it taught us? Those of us with SMA and other rare diseases are keenly aware of the benefits that years of advocacy, research, fundraising, and education have brought to our disability communities ...
TRACK 5: Challenges of Living with a Rare Disease: Patients with rare diseases face numerous challenges, including delayed diagnosis, limited treatment options, and a lack of awareness among healthcare professionals. The emotional and financial burden can be significant, affecting not only the patient...
Awareness and experience transfer are crucial, so being part of international networks/collaborations that interactively involve physicians, researchers, and patients with rare diseases is an inevitable necessity. Section Editor Isabelle Audo On this Rare Disease Day 2024, we have to emphasize the huge ...
Rare Disease Day 2024 (February 29th) Since 2008, the last day of February has been dedicated to raising awareness about rare diseases. This global campaign is a precious opportunity for everyone to contribute to raising attention to 300 million rare disease patients and support initiatives around ...
We find this useful as it reminds the science and clinical teams why they need to understand and cure the disease, and it gives patients hope for the future. I've represented the society at national and international levels, as a member of the Genetic Alliance UK, Specialised Healthcare ...
Rare Disease Day 2024 (February 29th) Since 2008, the last day of February has been dedicated to raising awareness about rare diseases. This global campaign is a precious opportunity for everyone to contribute to raising attention to 300 million rare disease patients and support initiatives around ...
A rare disease is a disease that affects only a small portion of the population. However, rare diseases are ...
Disease Education We provide information about rare diseases, patient organizations and other resources. We also promote awareness of rare diseases among physicians and other medical professionals. Patient Assistance Programs We pioneered Patient Assistance Programs in 1987. Today, NORD programs include free...
The last day of February has been designated as worldwide "Rare Disease Day" to call attention to the public health issues associated with rare diseases, which affect nearly 30 million Americans and countless others around the world.The Kane County Health Department is part of the U.S. coaliti...
Landmarks illuminate purple and blue for feeding tube awareness By CONTRIBUTOR 28 January 2025 RARE caregiving Considering caregiver value at JP Morgan By CONTRIBUTOR 22 January 2025 Turning the tide for rare disease Rare disease champions: how Cycle Pharmaceuticals and their partner Inceptua ...