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Lauren and Nick.
Dave, Suzi, Lauren - Philadelphia, PA
Rare Disease Day
The NIH estimates that 18-25 million Americans have a rare disease. In the United States, a disease is considered rare if it is believed to affect fewer than 200,000 Americans. Some other countries and the European Union have similar but slightly different definitions.
What does it mean, “to affect?”
By definition, to affect, means to act on or to produce a change in. How many are truly affected by rare diseases?
Neuroendocrine tumors have an estimated prevalence of ~105,000 patients in the United States. From speaking with friends, families and caregivers of patients I know that this number greatly underestimates those affected by neuroendocrine tumors.
In honor of rare disease day I am honored to share the words of both patients and their family members from CFCF’s Survivor Stories.
From a daughter, "I support CFCF so that other families won't face what we did.”
From a caregiver and family member, “Most cancer patients are not told there is nothing that can be done. Carcinoid patients should also hear there are treatments available."
From a patient, “There isn't much research being done on cancer like mine. But maybe all cancers are related - and maybe researching rare cancers will lead to an understanding of more common cancers."
From a patient, "This journey i am on is mine - but it does not only affect me, but all those who love me."
Truly neuroendocrine tumors do not affect less than 200,000 but many, many more people. Furthermore, 200,000 alone cannot fight neuroendocrine tumors. Fighting a rare disease takes support of patients, their families, their friends, their suppoorters as well as dedicated clinicians and researchers, pharmaceutical companies, government agencies and more.
On rare disease day I was reminded of how many people are affected in profound ways by just one diagnosis. I have seen time, and time again, how communities rally around one patient.
Let's celebrate all the ways that people come together in support of neuroendocrine cancer patients. On CFCF’s website we provide resources to help communities fight for a cure by increasing awareness and raising critical funds for research.
For help in increasing awareness please visit Advocate for Change.
To start, or participate in an existing fundraiser, visit the fundraising section.
To read and share your story visit Survivor Stories.
Finally, the video section contains a series of Brief and informative videos with Dr. Diane Reidy-Lagunes from Memorial Sloan Kettering Cancer Center that I encourage you to view and share with others: