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.
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.
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.
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.
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.
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.
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