Greetings Everyone!

It’s that time of year again – Rare Disease Week 2019 preparations are underway!
This page contains hyperlinks with important information. Be sure to click on them!

 
 
Travel Stipends:

There are still travel stipends available for advocates. They close December 14, 2018. Stipends range from $400 to $1,000 depending on the distance to be traveled, and are limited to one per family. In order to receive a stipend, advocates must attend the Legislative Conference (Feb 25) and Lobby Day (Feb 26). The EveryLife Foundation will have a check ready for recipients on Feb 25 at the legislative conferences.

Rare Disease Week Overview:

The EveryLife Foundation is a rare disease nonprofit dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. Sickle Cell Disease is considered a rare disease. The organization hosts Rare Disease Week February 24 to February 28, 2019. Rare Disease Week brings rare disease community members from across the country to Capitol Hill to educate legislators on issues that impact the rare disease community. For more information on rare disease week, join the educational webinar on December 12, 2018.

The two most important days are February 25, a day-long Legislative Conference to learn how to lobby, and February 26, 
a lobby day on Capitol Hill for rare disease topics. Registration for the event opens January 3rd. Once registered, EveryLife
will schedule appointments with your members of Congress for you.

Last Year’s Success: 

During Rare Disease Week 2018, the sickle cell community showed up in large numbers. Over 100 people applied for the travel stipend, and EveryLife (notes that they could only award seven stipends to SCD since the stipends are open to all rare diseases). At the event 44 sickle cell advocates attended. This was the highest SCD turnout for rare disease week ever and the most people from diseases population that the EveryLife Foundation has encountered.

This year, we are looking to continue engagement and recruit even more people to attend. Overall, Rare Disease Week is packed with networking, learning, and an opportunity to meet other rare and chronic disease advocates from your states.
One thing we learned from Rare Disease Week 2018 is that we have a lot in common with other conditions. The more voices involved, the louder we are.

If You Can’t Make Rare Disease Week: 

If you already know that you cannot attend Rare Disease Week, you can submit a video to your state leaders.
EveryLife Foundation will deliver the videos and letters to Representatives and Senators from your local community.

Stay tuned for more links when they become available and be sure to tell your friends!