The month of February is all about feeling the love and here at Cure HHT we’re embracing all the love as we highlight our very special HHT Community during Rare Disease Month. February was officially declared Rare Disease Month in 2008 with February having the “rarest” number of days. Thirteen years later, we continue to be rare but stronger than ever!
This year (a non-leap year), Rare Disease Day will be celebrated on February 28th and we are pulling out all the stops to show our stripes as members of the rare disease community! Rare Disease Month is the official international awareness-raising campaign for all 7,000 known rare diseases. There are over 300 million people worldwide living with a rare disease—that’s 1 in 20 people! With HHT being a part of the rare disease family, that equates to 1 in 5000 (with 90% still undiagnosed). With the support of NORD (the National Organization for Rare Disorders) we are raising awareness amongst the general public and decision-makers about HHT and its impact on patients’ lives.
There are lots of ways to show your stripes before Rare Disease Day, Here are just a few:
- Let people know you are rare! Change your FB or Instagram profile with the Rare Disease Month colors/banner/frame.
- Show your stripes on you or your car — literally! Purchase an HHT branded Rare Disease T-Shirt or Bumper Sticker (Cure HHT Zazzle Store)
- Your personal story makes an impact – Share Your Story on Social Media or with us for a feature in our Blog (What the HHT?)
- Your voice is important – Write your local lawmakers and tell your story so that Rare Disease patients can have equality when it comes to research, funding and insurance coverage.
Follow along this month as we share rare disease facts in relation to HHT, kick-off a campaign to honor those who are living with HHT and/or lost their battle to the disease, and light-up Social Media on Rare Disease Day! Join us as we show our stripes all month long and lift HHT into the rare disease spotlight!