A 76-YEAR-old woman diagnosed with cystic fibrosis, has become the oldest ever first presentation case in Ireland. US and UK registry data reveal the oldest patients with CF in these countries are 82 and 79 years respectively. An increasing number of Adults are being diagnosed later in life due to the increased recognition of milder forms of CF.
Timely diagnosis and proper treatment of milder forms of CF are crucial for the quality and length of life of these individuals. I wander how many people in the world are walking around with CF and do not know it. Diagnosis of milder forms of CF may help increase the numbers and promote more research towards the diseases. This will in turn result in more effecting drugs and treatments and potentially decrease the price of these drugs and therapies.
Are the industry service providers and foundations willingly keeping the CF numbers down so the disease classifies as an orphan/rare disease? Are there advantages for the CF sufferers to keep this disease in the orphan/rare disease classification? Are these benefits of orphan disease classification going to the foundation, pharmaceuticals and device companies or to the patients? Will late manifestations of CF like pancreatitis and CF related diabetes shed more light on milder forms of CF?
There needs to be more light shed on these topics…
Join the discussion on Facebook! https://www.facebook.com/knowcf/posts/10152806536308777
Timely diagnosis and proper treatment of milder forms of CF are crucial for the quality and length of life of these individuals. I wander how many people in the world are walking around with CF and do not know it. Diagnosis of milder forms of CF may help increase the numbers and promote more research towards the diseases. This will in turn result in more effecting drugs and treatments and potentially decrease the price of these drugs and therapies.
Are the industry service providers and foundations willingly keeping the CF numbers down so the disease classifies as an orphan/rare disease? Are there advantages for the CF sufferers to keep this disease in the orphan/rare disease classification? Are these benefits of orphan disease classification going to the foundation, pharmaceuticals and device companies or to the patients? Will late manifestations of CF like pancreatitis and CF related diabetes shed more light on milder forms of CF?
There needs to be more light shed on these topics…
Join the discussion on Facebook! https://www.facebook.com/knowcf/posts/10152806536308777