Rare Disease Week on Capitol Hill 2020
Program Book
STAY ENGAGED
August 3rd – September 7th, 2020
Registration Opens May 4th
STAY CONNECTED
SAVE THE DATE
Rare Disease Week on Capitol Hill
July 19th – 22nd, 2021
WHAT ADVOCATES ARE SAYING ABOUT RARE DISEASE WEEK 2020
(Attendee responses to our Rare Disease Week 2020 survey)
“The entire event and all activities encouraged me to see how people care for each other when they don’t see any hope elsewhere.”
“I felt so energized and inspired by the event, and it was very well-organized!”
“I would do it again in a heartbeat, it felt great to be valued and heard. It gave me purpose and I was inspired when I came home.”
“Fantastic week, by far the best patient advocacy event. Thank you all for your hard work!!”
“Thank you. Our voice was heard. You did an excellent job with content, training, etc.”
“I cannot wait to come back and learn more next year!”
“Great opportunity to connect with the rare disease community, continue building relationships and exchanging information about effective advocacy.”
“I have attended for several years and this event continues to grow and improve every year. I am thankful for the opportunity.”
“Wonderfully organized event. We found it to be very informative, educational and rewarding!”
“As a rare disease patient, it’s important to make our voices heard so we are considered in this climate of healthcare reform, especially considering our preexisting conditions may not be protected in future regimes.”
“It was great and very well run. Thank you for providing such wonderful information that I will use going forward when I continue to advocate on behalf of rare diseases.”
“This was a very informative and organized event. It was a great way to network, learn, and advocate.”
“It’s a fantastic conference, you go above and beyond! It’s great outlet for the rare community.”
“Overall what a wonderful experience. I learned a lot about other diseases, health policies and met many new friends!”