Recognizing Rare Disease Day

Last night I was part of a social media discussion on how to recognize Rare Disease Day hosted by NORD (National Organization for Rare Disorders). As I have said before rare diseases affect 1 in 10 people in the United States and are defined as any disease or disorder that affects less than 200,000 in this country. The reason that we have rare diseases defined as a category at all is because each population for each specific rare disease is so small (over 7000 rare diseases have been identified!), and often their battles for diagnoses and care are so similar that bringing them together as one makes the fight a little easier when they unite as one.

On the panel that I had the honor of facilitating were three other women. All four of us shared our stories of how we are personally affected by rare diseases either ourselves or through close family members and how we have advocated for rare diseases. We have chosen to share our stories and the four of us do so in our own ways quite often as part of organizations that we work or volunteer for. But there was one topic that I wanted to address here today that is for people who do not want to share their story - is there a way to help? Sharing your story is vulnerable and it is not for everyone, for a variety of reasons. But there are always way that you can help!!

Again, 1 in 10 people have a rare disease - so even if you are not sharing your story - there are people in your community who are affected by rare diseases. On social media over the next three weeks there will be a lot about Rare Disease Day because our community is excited to have a true rare day - February 29th! Share a few posts to help spread awareness of this day - chances are before you knew you were personally affected by a rare disease you did not know that this day existed. Help us spread the word to others who may not be aware. We try to make many of our posts fun and lighthearted in nature while still hitting with the hard facts of rare disease.

The discussion last night was all part of NORD and they are a wonderful resource for all things rare disease and the US sponsor of Rare Disease Day. If you visit their page - https://rarediseases.org there are a few ways to get involved. If you go to this site in February as soon as you get on there is a pop-up to get more information about getting involved with Rare Disease Day and that will direct you to https://:rarediseaseday.us - the official site for Rare Disease Day in the United States. Then there is the "Driving Policy" tab you can click. Here you can see where NORD stands on policies that affect the rare disease community and if you then choose "Take Action" you can sign up to be notified when there is a call to action. Then when there is a policy and they can use more people in your area asking legislators for support you would be notified with a form letter that you can add to if you choose already for you to send to the officials for your specific area. Also, on that NORD home page is a "Get Involved" button - and there are all kinds of ways to get involved including signing up to be a volunteer. Also, on NORD's site are listed member organizations. These are organizations that have missions that align with NORD, many are disease specific and I encourage you to also look at these.

All four women who spoke last night were Community Ambassadors for their state's Rare Action Networks. Rare Action Networks are a part of NORD - the grassroots branch - feet on the ground in their communities, reaching out to patients and caregivers and connecting them with resources. Visit https://rareaction.org to signup for your state's Rare Action Network. On this page you will also see the contact information for your state's Community Ambassador. Not all states have a Community Ambassador, but you will still get information on what is going in within the general community and be notified when your state has one in place. We encourage everyone interested in rare disease information, education and go go to that site and sign up.

And the other way I would like to mention to support Rare Disease Day is by charitable donations. All nonprofits have been hit hard in the last several years and giving of your time talents, and.or money is greatly appreciated.

Rare Disease Day is just one day of 366 this year. It is a chance for those of us in the rare community to spread awareness and bring others into this community who belong here. We use this day, and the whole month of February to raise awareness and let people know that this community is place for all kinds of rare, undiagnosed and those still looking for answers. No effort in helping to do this is too little and no effort is done with out the greatest of appreciation from the entire community and most importantly from those you reach who hear you. As NORD says so well "Alone we are rare. Together we are strong."