Rare Disease Day: Making Patient Voices Heard

Rare Disease Day: Making Patient Voices Heard

Rare Disease Day, now celebrating its ninth consecutive year, occurs annually on the last day of February. On February 29, the rarest day of 2016, join ASF and countless others worldwide in raising awareness for the challenges faced by those living with these often-overlooked diseases.

What is a Rare Disease?
The first Rare Disease Day was held in Europe but has quickly spread and currently receives global support from over 80 countries, including the United States. In the US, a rare or orphan disease is one affecting fewer than 200,000 Americans at any given period in time. Alport syndrome is a rare genetic disease affecting approximately 30,000-60,000 individuals, many of whom may be unaware they are even affected. Roughly 30 million Americans (almost one in ten) suffer from a rare disease, meaning if you don’t have a rare disease you probably know someone who does.

While each of the 7,000 rare diseases has unique symptoms and challenges, they all share many common struggles. For instance, as many patients with Alport syndrome are keenly aware, it can be quite difficult to detect and diagnose a rare disease. In fact, nearly 40% of rare disease patients are misdiagnosed at least once because rare diseases often exhibit symptoms similar to those in more common illnesses. In addition, securing proper follow-up care after a diagnosis is a challenge as most rare diseases do not have an approved treatment because funding to discover treatments is difficult to find. Thankfully, with the help of medical experts and researchers, Alport syndrome Foundation is able to offer general guidelines to members of our community.

Finding Your Patient Voice
The 2016 Rare Disease Day global theme is Patient Voice, and is part of a larger message: Join us in making the voice of rare diseases heard. As patients with Alport syndrome continually seek out the best available knowledge, they become more confident in their Patient Voice and subsequently, their handling of the disease.

Since our community members live with and are affected by the daily struggles of Alport syndrome, they are in many ways equally as important to their own treatment as medications and care providers. By educating themselves more and more each day, patients can ask better questions of their healthcare providers, and in turn, receive better answers most suited to their particular needs. As the result of a continually expanding Patient Voice, our patients are frequently heavily involved in the decision-making process regarding treatment.

We’re sure you recall the initial feelings of extreme isolation and uncertainty upon diagnosis. It’s possible you had never even heard of Alport syndrome previously. Talking to friends about your disease is oftentimes difficult, as they simply don’t understand what exactly Alport syndrome is and that’s not their fault. The truth is, a rare disease doesn’t receive mainstream media attention, immense funding or extensive research associated with household names like cancer.

This is exactly why Alport syndrome patients must make their Patient Voice heard, not just on Rare Disease Day, but every day. At ASF, we seek to alleviate and eventually eliminate that feeling of isolation by raising awareness and encouraging patient support via our webpages. It is now time for members of our patient community to help their peers by joining us in making our collective voice LOUD and CLEAR. Together, we can make a difference not just for current patients, but for future patients still lacking diagnosis.

Advocacy for rare diseases in February isn’t limited to a single 24-hour event. ASF co-founder and President Sharon Lagas will be joining other patients and healthcare providers participating in Rare Disease Week on Capitol Hill (February 29-March 3, Washington, D.C.) organized by Rare Disease Legislative Advocates (RDLA). By advocating directly on Capitol Hill, Sharon and other advocates will ensure the Patient Voice of the rare disease community is not ignored. Their actions will hopefully inspire public officials to make informed decisions benefiting our community at large.

We strongly encourage members of the Alport syndrome community to give their Patient Voice a platform on Rare Disease Day 2016. Below are some simple ways you can get involved:

Join the discussion on Rare Disease Day!

  • Change your social media profile image or banner to the Rare Disease Day logo to start conversation and show your support.
  • Follow ASF social media using the links at the top of this page.
  • Follow Rare Disease Day organizers in the US and around the world for content to share and to find events near you.
  • Join the international Thunderclap and use your social media to send out an automated one-time message on February 29 about Rare Disease Day at the exact same time as thousands of people around the world.
  • Use hashtags #RareDiseaseDay and #AlportSyndrome when sharing information or creating your own content.

Make your Patient Voice heard!

  • Find the State House Event in your state and attend to share your story.
  • Submit your story before Rare Disease Week and have your story hand-delivered to members of Congress from your area.
  • Share your rare disease story on the US or international Rare Disease Day sites or on social media using #RareDiseaseDay, #WRDD2016 and #AlportSyndrome.
  • Send your story to ASF for our Family Stories

After you’ve officially warmed up your Patient Voice with Rare Disease Day, we can’t wait for you to join us in raising awareness next month as part of Alport Awareness Month in conjunction with National Kidney Month. Alport Awareness Month is unquestionably one of the most important times of the year for us and we can’t do this without YOU! In our next blog post, we’ll include ways your Voice can help make March the single greatest awareness campaign in ASF history! Visit our Alport Awareness Month page now to get a head start!



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