Rare Disease Day 2016. Making Your Voice Heard

February 29th is Rare Disease Day, a day dedicated to raise awareness about rare diseases and their impact on patients’ lives. The theme for 2016 is all about you, individuals and families living with a rare disease and the importance of making your voice heard. 

What is a Rare Disease?  Each country has a slightly different definition on what qualifies as a rare disease. In the US, a disease or disorder is defined as rare when it affects less than 200,000 Americans at any given time. Looking for a list? You can find one here, thanks to the National Organization for Rare Disorders (NORD).

Many of the medical foods that we make here at Nutricia – like Neocate products – are used by individuals with a rare disease. Our goal is simply to improve their lives through medical nutrition. Rare diseases include some food allergy conditions, like food protein-induced enterocolitis syndrome (FPIES) and eosinophilic esophagitis (EoE).

Why your voice is important. It is important to speak out and educate others in the medical and legislative community on the impact your rare disease has on your everyday life and what you need to make a difference in your quality of life. Now I know what you might be thinking. You are not the right person to speak to legislators or medical professionals and make a difference, and you would be wrong. Not only are you the expert on yourself and what you need to improve your quality of life, but because you belong to a unique and small community, you are also an expert on your disease.

Personal stories on what you are experiencing and what would help either through medical research or legislation is vital to instigate change. It is necessary to ensure that legislators and medical professionals remember that rare diseases and disorders are a public health priority.

Why today? Rare Disease day is always the last day in February. It’s especially “rare” this year because it’s February 29th, which only happens every four years!

Power in numbers. When a large community speaks out together, such as on a day like Rare Disease Day 2016, there is power in numbers. This day is celebrated by not only patients, but also family members, patient organizations, researchers, industry, medical professionals, and legislators all around the globe to amplify your voice to be heard across the world.

Tips for success: You may not realize that you advocate for yourself and your loved ones regularly and likely with great success. Educating family members, school classmates or faculty, coworkers, and your community members on your needs in relation to your diet and rare disease is advocating for yourself. But let’s take a moment to go over some tips to help you be a better self-advocate.

1)     Know your “Ask”. Advocacy should be a call to action, so what action would you like the person or organization to take on your behalf? It is important to keep the action you are seeking or your “ask” in mind and make sure to state it at the beginning and end of the conversation so everyone is clear on how they can best help you. It can be something specific like support for a piece of legislation, or something broad like funding for research or medical coverage. Even if you are asking for something on a local level such as your school or community, make sure you are clear on what actions they can take to support you when living with a rare disease.

2)     Tell Your story. There is nothing more powerful or more helpful for key people than your personal story. When key decision makers know your story and how your request will benefit you and others in your community that is the best motivation for them to help you, and motivate others to join them and get something accomplished on your behalf.

3)     Maintain Communication. Once you create that relationship, make sure to keep up communication so you can encourage progress. Communication when things are going well and when a change is desired is important. Relationships with key people are important, but relationships with their staff are equally or sometimes even more important.

Check out these pages or more information on Rare Disease Day events near you, or how to get involved. Now go and tell your story!! You can share your story or read stories others have shared with the rare disease community here on the 2016 Rare Disease Day website.

In fact, the Neocate team here at Nutricia would love to hear your story and learn how our products have helped you live with your rare disease. So tell us: What’s your rare disease story?

-Kristin Crosby, MS, RDN

Published: 02/25/2016
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