Did you know that “Rare Disease Day” is coming soon, on February 28, 2018? Do you know that “rare diseases” aren’t so rare after all? According to the the National Organization for Rare Disorders, there are 7,000 rare diseases and disorders that all together affect 30 million Americans; majority of these are children. In other words, 1 in 10 Americans live with and suffer from rare diseases. This day is an annual celebration to recognize and bring about awareness to the public but also to decision makers. We can each make a difference by either hosting an event, participating in online activities or doing both. Rare Disease day always lands on the very last day in February, the 28th or 29th (if Leap year). Each year we try to increase awareness and knowledge of rare disorders and bring attention to the kind of impact that they have on these people’s lives. Most of these have no cure. Sadly, they largely go unrecognized, under-diagnosed and misdiagnosed. Another fact is that the majority of these diseases, about 95%, have no treatments available and no cures.
The U.S. Pain Foundation supports “Rare Disease Day” and therefore we have provided several ways to include this day in your communities worldwide. We feel that this special day “falls in line with the organization’s mission to connect, inform, empower and educate chronic pain and invisible illnesses.”. There are many ways that you can can become involved in this event. One way that you can raise awareness, is by hosting an awareness event table in your city. You may visit the U.S. Pain Foundation website at the link provided in the above quote, to read more about this day and the events surrounding it. You can also visit the www.Rarediseaseday.org website to get more background and historical information about this day. If you would like to participate in worldwide events you can visit: http://rarediseaseday.us/events.
Other ways to become involved are to: “Save the date” of 2-28-18, because #NORD will be hosting a #tweetchat (#RDD18Chat) on #RareDiseaseDay at 1:00-2:00pm EST. You can also retweet some facts, such as this one: “There are 1 in 10 Americans that live with a #raredisease. That is 30 Million Americans!” You can download the special Social Media logo’s etc. and post them on your Facebook Cover picture and your profile photo. There’s also an official YouTube video that you can share on your own Social Media accounts, at: https://youtu.be/02zR9r-LOfQ. You can follow them on their USA official links at: Twitter @RareDayUS, Facebook @ Rare Disease Day US and Instagram @RareDiseaseDayUS. The Worldwide official links are here: Facebook @Rare Disease Day and Twitter @RareDiseaseDay. The hashtags that you want to use if you would like to spread awareness via social media are: #RareDiseaseDay, #RareDisease, #RareDiseases, #1in10, #CuresNow and #NORD. There is an entire list of ways to get involved right from your own home, bed or recliner; right here at https://www.rarediseaseday.us/get-involved/social-media/#1474047637908-88935dfd-3a29,
The National Organization for Rare Disorders (NORD) are the sponsors of this day and these events. But the participants in “Rare Disease Day” are the National Institutes of Health (NIH), the U.S. Pain Foundation and other patient organizations, government agencies and companies . We also encourage people to plan Advocacy events near their state capital or house to help with issues that are relevant at the state level. The worldwide theme this year for Rare Disease Day 2018, is much needed research of various rare disorders. When there is active research being done, it brings people who are ill, the hope they need in order to continue living and trying.