Kudos to the Cystic Fibrosis (CF) Foundation for building a mighty network of care centers for CF patients all across this great nation of ours!
The Foundation has set forth standards so that each cystic fibrosis center is fully accredited to assist in the treatment and care for patients and their caregivers—and it’s working well! Extremely well. They encourage patients to visit at least quarterly to receive the latest in diagnostic testing, treatment, and lifestyle management. That’s one of the key reasons why some patients are living longer than they did just 10 years ago.
But with all of the 100s and 1000s of rare diseases plaguing Americans, does anyone really have more than a chance at survival? Did CF become prominent because nearly 30,000 Americans have it? Is that what caught the eye of pharmaceutical companies to develop treatments that would also reward them financially? Is that why the Foundation is able to raise more funds? What’s a patient to do if they are only 1 in 500 people who have a rare disease? Where is there hope for a treatment?
Well, expert care from a team of specialists in CF can be easy to find!
Just go to their website (here) and put in info in. It’s that simple.
The one burning question I have is WHY aren’t CF care centers a standard for every rare disease? What’s it going to take, socialized medicine?!
If you want to learn more about CF Care Centers, click here.
