Show YOUR STRIPES!

RARE DISEASE WEEK IS HERE!

Here’s something I’ve learned firsthand. No matter how someone looks or acts, you truly never know what’s happening in their lives.

What I will never forget about the time period, and what stands out the most, are the small kindnesses that strangers and friends offered me.

Now, whenever I get frustrated or annoyed with someone’s actions, I remind myself that I don’t really know what’s going on in their life. I try to take a breath, not take it personally, and trust that they are doing the best they can.

You may never know how much a small act of kindness will affect someone.

Never regret a day in your life. Good days give you happiness and bad days give you experience. Both are essential in life. All are God’s blessings, have a great day.

Isn’t it funny how day by day nothing changes, but when you look back, everything is different.

C.S. Lewis

CELEBRATE WITH US!!

To Follow ALONG!

We are excited many of you will be joining us in DC for Rare Disease Week on Capitol Hill. For those who are not able to travel to Washington, DC, there are a number of ways to participate from your own home! Please feel free to share with your family and friends too! Below are five ways you can make your voice heard during the week’s events.

  • Monday: Watch the livestream of the Legislative Conference on Monday, February 25th to learn about key legislation affecting the rare disease community. The draft agenda is available here, and you can register for the free livestream here.
  • Tuesday: Call or email your Members of Congress on Lobby Day on Tuesday, February 26th. The one-page background papers for each of the key legislative issues discussed at the Legislative Conference will be available here prior to Rare Disease Week. You can review them and decide which you might want to ask your Members of Congress to support. You can find more information on calling and emailing your Senators and Representative here.
  •  Wednesday: On Wednesday, February 27th, join our Rare Disease Congressional Caucus briefing from 2:00 pm – 3:00 pm EST.  Titled “Rare Disease 101”, this briefing will provide insights on rare diseases and its’ impact on rare disease patients and their families. Register for the free livestream here.
  • Thursday: Watch the livestream of Rare Disease Day at the National Institutes of Health (NIH) on Thursday, February 28th. The agenda and link to register are available on the NIH website. Speakers include leaders from NIH and the Food and Drug Administration (FDA), as well as representatives from a number of patient advocacy groups.
  •  Social media: Stay engaged with our acitivites by connecting with us on Facebook, Twitter and Instagram. On Twitter, we are @RareAdvocates; on Instagram @Rare_Advocates. For posts related to Rare Disease Day or your own advocacy efforts, be sure to use our event hashtag, #RareDC2019, and to tag RDLA in your posts.

We hope that you will take part in these remote participation opportunities! If you have questions regarding any of these events, please email Shannon von Felden at svonfelden@everylifefoundation.org.

Thank you to our 2019 sponsors:

https://rareadvocates.org/wp-content/uploads/2019/01/2019-RDW-Legislative-Conference-Agenda_General_1-31-19.pdf

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