Join us for Rare Disease Week: Five Ways to Participate Remotely!
Rare disease day takes place on February 28th each year. The entire week provides a unique opportunity to advocate and raise awareness of key policy issues that affect amyloidosis patients.
There are roughly 7,000 rare diseases affecting over 30 million people in the United States. Every one of these diseases has an impact on everyday life for patients and caregivers. This week provides an opportunity for all those affected by rare diseases to join forces and advocate for vital support to advance research, accelerate drug development and ensure access to new treatments.
ARC will be playing an active role by taking a group of amyloidosis patients and caregivers to Capitol Hill to highlight key issues and advocate for change.
Even if you aren’t attending in person, there are still ways you can contribute.
1) Follow us on social media: to see our advocates in action at: https://www.facebook.com/amyloidosisresearchconsortium/
2) Share your unique story on facebook: By highlighting the impact of amyloidosis on your life, you can play an important role in raising awareness about the symptoms and impact of the disease.
3) Social media: Stay engaged with the activities by connecting on social media. On Twitter follow RDLA @RareAdvocates and ARC @Amyloidosis_ARC and use hashtag #RareDC2019. On Facebook you can follow RDLA and Amyloidosis Research Consortiumto get the latest updates
4) Contact your elected officials: to tell them about your experience with amyloidosis, ask them to join the rare disease caucus, and support policies that will enhance rare disease research.
Members of the U.S. Congress
• U.S. Senators—Get contact information for your Senators in the U.S. Senate.
• U.S. Representatives—Find the website and contact information for your Representative in the U.S. House of Representatives.
5) Host an online fundraiser: to increase awareness of the disease and raise funds to support much needed research toward finding a cure for amyloidosis. Click the link to create a facebook fundraiser.