Category: Advocacy

Rare Disease Week
2018 Rare Disease Week on Capitol Hill
Every year around Rare Disease Day (February 28th), The EveryLife Foundation hosts Rare Disease Week on Capitol Hill. The event aims to bring together the rare disease community to educate them federal legislative issues and give them the chance to...
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Rare Disease Week Logo
Can’t Attend Rare Disease Week? Five Ways to Participate Remotely
Rare disease day is on February 28th and every year the Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases, hosts Rare Disease Week on Capitol Hill. The entire week provides a unique opportunity to raise awareness...
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Greg Foster
Olympic Athlete Greg Foster Struggles to Find Accurate Diagnosis
At Age 57, Retired American hurdler, Olympic Silver-medalist, and 4-time world champion in the 110-meter hurdles, Greg Foster, was diagnosed with AL Amyloidosis. Below, he recounts his long journey to finding a diagnosis. In early 2016, I was diagnosed at...
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Capitol Hill
Save the Orphan Drug Tax Credit!
Earlier this month, House Republicans proposed eliminating the orphan drug tax credit, which was originally passed as part of the Orphan Drug Act in 1983 as an incentive for drug makers to spur the creation of medicines for rare diseases....
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Northern California Support Group and Patient’s Day Hosted by Prothena
The Northern California Amyloidosis Support Group which meets quarterly every year, held their 14th annual anniversary meeting in July in South San Francisco.  The event was hosted by the team at Prothena and was a very successful Patient’s Day event...
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AMYLOIDOSIS RESEARCH CONSORTIUM, INC.
320 Nevada Street, Suite 210 Newton, MA 02460 USA | 617-467-5170
arc@arci.org

ARC is a 501(c)(3) nonprofit organization