Rare Disease Day


Yesterday was Rare Disease Day - that being Leap Day, it actually falls on the last day of February. It was launched in Europe five years ago by the European Organisation for Rare Diseases (EURORDIS), comprised of more than 500 rare disease patient organizations in 46 countries.Rare diseases are defined as life-threatening or chronically debilitating diseases, which of course includes rare cancers, and affects fewer than 1 in 1,500 people (or fewer than 200,000 people in the United States). Most patients can relate to the statement from the group on why they chose to establish the awareness day: "Due to the low prevalence of each disease, medical experts are rare, knowledge is scarce, care offering inadequate, and research limited. Very few cures exist."Another aspect of rare cancers is isolation - there will likely be no face-to-face support group you can drop in on at your local hospital, no awareness walks, no "color" to wear during an awareness month. It's hard enough to tell friends and family that you have cancer, much less one they've never heard of before.We asked our Facebook friends with rare cancers to tell us What do you do to connect with other patients and survivors and find information on your type of cancer? They mentioned Facebook, email support groups and online chats. If you have a rare cancer, feel free to post your comment on Facebook and let us know if you're connecting with others online or in person. While most cancers mentioned on our Facebook post include ones few people are familiar with, such as extrapleural solitary fibrous tumor of the extremity, malignant phyllodes tumor, dermatofibrosarcoma protuberans, and a rare form of Hodgkin lymphoma (which is considered rare in general) called subtype nodular lymphocyte predominant, many patients with so-called "common cancers" still face those rare cancer issues, including children and young adults with leukemia, those with a rare form of a common cancer, such as inflammatory breast cancer, and men with breast cancer. Joe, a survivor of breast cancer posted "I try to be the catalyst to inform men that they are not immune to this disease. Amazingly so many men have no idea that they can get breast cancer." You can find more information on Rare Disease Day at rarediseaseday.org. Other resources for those with rare cancers include:Imerman Angels (imermanangels.org, a nonprofit that pairs newly diagnosed patients with a patient or survivor of the same type of cancer)

National Organization for Rare Diseases (rarediseases.org)

NIH Office of Rare Diseases Research (rarediseases.info.nih.gov)

Rare Cancer Support Forum (rare-cancer.org/forum)

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