Rare Disease Day has a short history in the arena of national awareness events. It’s only been celebrated since 2008 in Europe and 2009 in the United States and if you check most web calendars of national awareness months/weeks/days, unfortunately you will not find Rare Disease Day listed.
Is it correct to say that Rare Disease Day has changed our world? How is that possible in just eight short years? What is it about Rare Disease Day that has changed our community from the inside out?
Prior to the celebration of Rare Disease Day, we had almost 7,000 disparate diseases, some genetic, some acquired, some in childhood and some in adults, some extremely debilitating, and some fairly mild.
Most did not have treatments. Most did not even have research. Most were not known or easily recognizable, even by specialist physicians. Many did not have advocacy groups. Most were never in the media, never in legislation, never on the minds of anyone other than the patients and families affected by them.
Rare disease umbrella organizations such as NORD, Global Genes, EURORDIS, Rare Disease United, and Genetic Alliance, serve vital functions in our community, affecting all of the issues above, including the promotion of Rare Disease Day.
These organizations are the Sherpas on our tribes’ ascents up Mount Everest. Without Rare Disease Day, our journeys would be unknown to most of the world.
We might all be on different expedition teams. We might choose differently among the many routes to the peak. While we climb with a team, climbing is still often a solitary and unique journey. Some of us only make it to base camp, while we longingly watch others climb much higher. We stare through the blinding snow in hopes of reaching the summit – a treatment, or better yet, the summit with a helicopter waiting to whisk us back to “normal” life – a cure. Our paths will never be exactly the same as those before us, after us, or even alongside us, but our knowledge, support, and connection along the journey are valuable to one another.
Because Rare Disease Day is the public proclamation of our private suffering, it serves as the news report of our expeditions for the summit. And how does that news report help the climbers?
RARE DISEASE DAY SUPPORTS
Reports about our collective journey encourages us. It helps the non-climbers to understand what we’re up against and how they might be able to help. It allows us to support one another and to receive support from those who are watching and listening to the news about Rare Disease Day.
RARE DISEASE DAY EDUCATES
Pushing out information to the world about our journey gives everyone a better understanding of the rare community, from the media to immediate family members. There are almost 7,000 rare diseases; what do some of those look like in real life? What are our challenges? What are the obstacles to diagnosis, treatment, and advocacy? How can the public help us move toward treatments and cures?
RARE DISEASE DAY CONNECTS
Once upon a time, we were almost 7,000 disparate communities. We were doing the same things, repeatedly, reinventing the wheel. We were each climbing the rope, seeing other climbers in our peripheral vision, but ignoring the fact that we were all on the same mountain.
Now, as a rare community, we are capitalizing on the experience and knowledge of one another. Learning from this group’s media, that group’s research plan, the other group’s registry design. We pull one another up the rope so that hopefully, someday, we can all reach the summit.
RARE DISEASE DAY MOBILIZES
Because we now know we’re on the same mountain, Rare Disease Day provides that singular event where people come out of the woodwork. We come together in a force to advocate for agendas that are in the interest of our community as a whole. We move up the mountain, whether we have to help, drag, or yell at other climbers to join us.
Our individual communities mobilize, such as through campaigns like our Project Alive campaign, and our national and international rare disease communities mobilize, too. We advocate for legislation, policies, awareness, and support. We fundraise. We champion our children. We become not alone on the mountain.
Editor’s Note: Throughout the week of Rare Disease Day 2016, BIO will be profiling stories of those affected by rare diseases, shedding light on these diseases and the families impacted by them. America’s Biopharmaceutical companies are working on treatments of these and many other diseases. For more information visit http://timeisprecious.life.