Today is Rare Cancer Day!

The Big Day is Here, Rare Cancer Day.

The National Organization for Rare Disorders (NORD) developed a day devoted to raising awareness about rare cancers. Spearheaded by the NORD Rare Cancer Coalition, which is comprised of 24 rare cancer-specific Member Organizations, Rare Cancer Day will be observed today, Oct 1 to highlight the challenges people living with rare cancers face and to unify individuals living with rare cancers for awareness & early diagnosis. 


Today is rare cancer day

National Organization for Rare Disorders (NORD)

The big day is here – Rare Cancer Day! Launched by the National Organization for Rare Disorders (NORD) and the NORD Rare Cancer Coalition, the goal of #RareCancerDay is to raise critical awareness of rare cancers and the need for greater research funding and patient support.

“I’ve never heard of that!” is often the response people living with rare cancers hear when sharing news of their diagnosis. People living with rare cancers also deal with a lack of available information and effective treatment options, in addition to the isolation, fear, frustration and other overwhelming feelings that can accompany a more common cancer diagnosis. October 1 is a day for raising awareness about the challenges people living with rare cancers face as well as highlighting the need for early diagnosis.

Today we are asking the world at large to join in #RareCancerDay by using the hashtag, posting online messages of support for the community and taking part in today’s activities, which include:

12:00p.m. Eastern – Facebook Live with NORD Director of Membership Debbie Drell sharing facts on rare cancers gathered from Rare Cancer Coalition Members. Join us: http://bit.ly/RCD-live

1:00p.m. Eastern – Free NORD webinar – Rare Cancers: Facts, Challenges and Patient Stories, featuring a panel of speakers including a top American Cancer Society researcher, patients and advocates discussing the state of rare cancers in America, stories of diagnosis and survival and ways to get involved in raising awareness. Register here: https://cc.readytalk.com/r/ix7ujckulvic&eom

All day – download the #RareCancerDay social media toolkit, with suggested social posts and graphics, and share rare cancer facts with your followers in order to raise awareness. Also, follow NORD on social media and share/retweet/like our posts on the day.

All day – visit the NORD website to read the “Voices of Rare Cancer” stories of brave individuals like Nicole, Graeleigh, Paul, Mackenzie and many others.


Are MPNs cancer? 

MPNs: Are they cancer? Does it matter?

In 2008 The World Health Organization (WHO), a specialized agency of the United Nations concerned with international public health, reclassified Myeloproliferative Disorders (MPDs) as Myeloproliferative Neoplasms (MPNs). Neoplasms indicates the abnormal growth of cells. The change placed Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis officially into the category of "cancer". Does that change anything for the person living day-to-day? Not necessarily. But linking MPNs to the cancer world allows us to better understand broadly what is going on; the bodily overproduction of blood.

MPNs, however, are largely chronic cancers. People can live for many years with an MPN, which can be confusing to family and friends.


What does neoplasm mean? 

The word "neoplasm" defines Essential Thrombocythemia (ET), Polycythemia Vera (PV), and Myelofibrosis (MF) more precisely than "disorder". Neoplasia (Greek for "new growth") means that the abnormal proliferation of cells - in our case, one or more lines of blood cells.  Many kinds of neoplasia result in lumps or tumors, either benign or malignant. They are called neoplasms, too, and are a good deal more common than our blood cell neoplasms.


Finding Support after a cancer diagnosis 

As a leader in MPN research and education, we know that a diagnosis of PV, ET or MF can be a confusing and emotional experience. Whether you’ve just been diagnosed, are experiencing new symptoms or want to take initiative to understand more about your MPN, here are 10 steps to take after an MPN diagnosis.

  1. Learn how the MPN Research Foundation can help you. MPNRF works every day to provide a welcoming community that educates and empowers MPN patients. We encourage you to explore our website so you can acquaint yourself with our available resources.
     
  2. Find a specialist. If you aren’t already under the care of a hematologist specializing in MPNs, we encourage you to seek one out. Visit Find a hematologist to find a doctor or treatment facility in your area that understands the particular needs of MPN patients.
     
  3. Become informed about your disease. It’s important to become knowledgeable about your disease so that you can successfully advocate for yourself during your MPN journey. Ask your doctor for help, use MPN Research Foundation as a resource and sign up on our website to get the latest MPN news. Learn what questions to ask your doctor
     
  4. Research your financial options. Economic information is an important part of advocating for yourself. Click here to read about drug reimbursements and financial assistance programs for the treatments you need to manage your diagnosis.
     
  5. Stay on track. It is critical to maintain your important medical information so that you stay on top of your treatment routine. MPNRF’s online patient registry, myMPN, can help you keep track of questions/answers for your physician, test results, blood cell counts, medications, dosing schedules, prescription refills, etc.
     
  6. Read other patients’ stories and share your story. The MPN community is a place where patients learn from each other. Read the stories of patients who are coping with an MPN and share your story with others by visiting the Patient Stories page on our website.
     
  7. Find support groups. If you’ve been diagnosed with an MPN it’s important to know that you’re not alone. Visit the Find Support section on our website to learn more about the many online and in-person support groups that offer a platform for you to connect with fellow MPN patients.
     
  8. Find a mentor. Peer-to-peer matching programs like Imerman Angels can be valuable for identifying a mentor who can help you walk through the initial stages of an MPN diagnosis. Visit Imerman Angel’s website at www.imermanangels.org to learn more about their service.
     
  9. Learn about clinical trials. By participating in clinical trials, you can help uncover opportunities that will advance MPN treatments and possibly benefit your personal prognosis. Visit our Find a Trial page to learn more and consult your physician to discover if clinical trials are an advisable course of action for you.
     
  10. Get involved. Are you looking for a way to join the MPN Research Foundation in the fight against MPN? Visit the Make an Impact tab to learn more about starting a support group, enrolling in a clinical trial, making a donation, hosting a fundraising event, sharing your story and more.

 

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