Αρχική World News Rare Disease Day: Raising Awareness for Rare Cancers

Rare Disease Day: Raising Awareness for Rare Cancers

Every year on the last day of February, the world recognizes rare diseases—a day now known as Rare Disease Day. Rare diseases affect approximately 25 million to 30 million people in the United States each year. The purpose of Rare Disease Day is to educate the public and raise awareness among decision-makers about the impact of rare diseases on patients’ lives. Decision-makers include those who make strides advancing critical research: policymakers, industry representatives, health professionals, advocates, and more. Through their support, more action can be taken to combat rare diseases.

According to the National Cancer Institute (NCI), about one-quarter of all cancer deaths each year are caused by rare cancers. And, in fact, most types of cancer are considered rare. Unfortunately, rare cancers are more challenging to treat than common cancers—and they are more difficult to research because of the limited number of patients. Other issues related to rare cancers include lack of knowledge among physicians about rare cancers, and difficulty finding experts who can answer questions.

Despite these obstacles, researchers do find ways to study rare cancers and develop better prevention strategies and treatments. For example, in June 2020 the results of the first randomized clinical trial for inoperable anal cancer determined the best chemotherapy regimen for patients. Before the trial, the usual approach for these patients was palliative care or care that focuses on providing relief from pain and other symptoms. Now, researchers are building on their findings in a phase III clinical trial that will add an immunotherapy drug to chemotherapy to hopefully improve patient care even further.

A clinical trial may be a good choice for someone diagnosed with a rare cancer, though patients should always discuss treatment options with their doctor first. Information about cancer clinical trials is available in OncoLink’s Clinical Trials section, which also includes a helpful clinical trial matching service. Examples of rare cancer clinical trials that are currently available include:

  • Neuroendocrine tumors (NETs)
  • Penile cancer
  • Mantle cell lymphoma

In the United States, NETs occur in about 12,000 people each year; these tumors can appear in any part of the body, but often develop in the lungs, gastrointestinal tract, or pancreas. Mantle cell lymphoma, a rare type of non-Hodgkin lymphoma, affects about 4,200 people yearly while penile cancer affects just 2,200 people each year. In order to be considered “rare,” a cancer can only occur in 40,000 people or fewer per year in the US. However, when taken together, rare cancers are actually more common than breast, colon, lung, or prostate cancer. And, people facing rare cancers are just as in need of better prevention, treatments, and cures as those facing common cancers.

For rare cancer resources or support, visit NORD, the National Cancer Institute or Cancer.Net. Consider joining the movement on February 28 by sharing your experience with rare diseases on social media using the hashtag #RareDiseaseDay. As awareness of rare diseases—like rare cancer—increases, so do improvements in patient care and outcomes.


Katie Heller, MA, is a guest writer who works in marketing and clinical education at ECOG-ACRIN Cancer Research Group. Previously, she held roles at the American Society of Clinical Oncology and their foundation, Conquer Cancer. She has nearly a decade of experience in oncology and health care communications. Katie received a Bachelor’s Degree in English from Loyola University Maryland and a Master’s Degree in Media, Culture, and Communication from New York University.

Source

NEWSLETTER

Συμπληρώστε το email σας για να λαμβάνετε τις σημαντικότερες ειδήσεις από το ogkologos.com

Βρείτε μας

2,449ΥποστηρικτέςΚάντε Like
57ΑκόλουθοιΑκολουθήστε

Διαβαστε Επίσης

Καρκίνος και Κορωνοϊός (COVID-19) ΜΕΡΟΣ Α

Εάν είστε καρκινοπαθής, το ανοσοποιητικό σας σύστημα μπορεί να μην είναι τόσο ισχυρό όσο κανονικά, έτσι μπορεί να ανησυχείτε για τους κινδύνους που σχετίζονται...

ΠΑΓΚΟΣΜΙΑ ΗΜΕΡΑ ΚΑΡΚΙΝΟΥ

Η Παγκόσμια Ημέρα Κατά του Καρκίνου καθιερώθηκε με πρωτοβουλία της Διεθνούς Ένωσης κατά του Καρκίνου (UICC), που εκπροσωπεί 800 οργανώσεις σε 155 χώρες του...

ΕΞΕΛΙΞΕΙΣ ΣΤΗ ΘΕΡΑΠΕΙΑ ΤΟΥ ΜΗ-ΜΙΚΡΟΚΥΤΤΑΡΙΚΟΥ ΚΑΡΚΙΝΟΥ ΤΟΥ ΠΝΕΥΜΟΝΑ (ΜΜΚΠ)

ΕΞΕΛΙΞΕΙΣ ΣΤΗ ΘΕΡΑΠΕΙΑ ΤΟΥ ΜΗ-ΜΙΚΡΟΚΥΤΤΑΡΙΚΟΥ ΚΑΡΚΙΝΟΥ ΤΟΥ ΠΝΕΥΜΟΝΑ (ΜΜΚΠ) Γράφει ο Δρ Παπαδούρης Σάββας, Παθόλογος-Ογκολόγος   Ο ΜΜΚΠ βρίσκεται αναλογικά στο 80% και πλέον του συνολικού...

Διατρέχουν όντως οι καρκινοπαθείς μεγαλύτερο κίνδυνο λόγω κοροναϊού;

Σε πρακτικό επίπεδο, τα δεδομένα των σχετικών μελετών υποδηλώνουν ότι η χημειοθεραπεία ή οι άλλες αντι-νεοπλασματικές θεραπείες δεν αυξάνουν σημαντικά τον κίνδυνο θνησιμότητας από...

FDA: Η ακτινοβολία των smartphones δεν προκαλεί καρκίνο

Σε μια νέα έκθεσή της, η Υπηρεσία Τροφίμων και Φαρμάκων (FDA) των ΗΠΑ αναφέρει ότι επανεξέτασε τις σχετικές επιστημονικές έρευνες που δημοσιεύθηκαν τα τελευταία...

Νέα ανακάλυψη, νέα ελπίδα για τον καρκίνο

Ένα νεοανακαλυφθέν τμήμα του ανοσοποιητικού μας συστήματος θα μπορούσε να αξιοποιηθεί για την αντιμετώπιση όλων των ειδών καρκίνου, σύμφωνα με επιστήμονες του πανεπιστημίου Cardiff...
- Advertisment -

Ροή Ειδήσεων

2021 ASCO Annual Meeting Research Round Up: Advances in Treating Lung Cancer, Breast Cancer, and Sarcoma

In the annual Research Round Up series, Cancer.Net Associate Editors answer the question, “What was the most exciting or practice-changing research in your field...

Avapritinib Not Superior to Regorafenib in Terms of Median PFS in Third-Line or Later Treatment of Patients with Unresectable or Metastatic GIST

Findings from an open-label, randomised, multicentre phase III VOYAGER study indicate that avapritinib is not superior to regorafenib in terms of median progression-free survival...

Patients less likely to rate cancer care as ‘very good’ during pandemic

Almost a third of cancer patients have reported receiving worse care since COVID-19 began, according to a new survey commissioned by Cancer Research UK. Whilst...

How to Avoid Spreading Harmful Chemo Chemicals to Members of Your Household

Cancer is not contagious, and neither is chemotherapy. However, harmful chemotherapy drugs can sometimes still be present in the bodily fluids of a person...

The right combination for early detection

The upcoming Early Detection of Cancer Conference brings together experts from multiple disciplines to share ground breaking research and progress in the field. Here...

Can’t Sleep? Tips for Coping with Insomnia

Insomnia* is common for cancer patients**, as well as for the general population. We frequently hear from our patients and their caregivers that sleeping through the night...