2017 Rare Disease Week in DC with RDLA


2017 Rare Disease Week in DC with RDLA

Feb.27 – March 2, 2017

Over 600 Rare Disease patients, caregivers, researchers and advocates met in Washington during the course of the week. 350 advocates attended the Legislative Conference that was held on Tuesday, Feburary 28th. Through out the day experts from Capitol Hill and the patient advocacy organizations discussed what to expect from the new Administration and Congress for the coming year. 328 Rare Disease Advocates participated in a total of 270 Lobby Day Meetings where Representatives were asked to join the Rare Disease Caucus as well as discussing issues involving Health Care Reform and incentives for rare disease drug development.

Janice Ragazzo, Trustee from the cureCADASIL Association attended these meetings. Over the course of 3 days, Janice had arranged meetings with many N.Y Representatives, Senator Charles Schumer and Senator Kirsten Gellibrand’s office to discuss the important topic of petitioning the CDC to have an ICD-10 code assigned for CADASIL. She also delivered patients stories that she received from the CADASIL support group to each of their state district representatives and spoke to their health legislative aides.

Janice also attended the day long seminar provided by the RDLA to enrich and update the Rare Disease Advocates on many topics that have an effect of Rare Disease patients. Some of the subjects discussed: New Funding for the NIH, Health Care Reform, Rare Disease Funding Issues.  Top Health Policy issues were also discussed such as the Orphan Product Extensions Now, Accelerating Cures and Treatments(OPEN ACT), Rebuilding and Expanding the Rare Disease Congressional Caucus, Newborn Screening and Understanding the Clinical Drug

During breakout sessions Janice was able to learn how to become a more effective advocate on Capitol Hill. Through her follow ups with those she encountered she was able to get Congressional Letters of support to request that CADASIL receive an ICD code sent to the CDC from the offices of Representative Sean Patrick Maloney 18th District N.Y. and Representative Paul Tonko District 20. Also, after meetings with Emil Kakkis, President and Founder of the Everylife Foundation, Julie Jenkins Executive Director and Max Bronstein, Chief Advocacy and Science Policy Officer a personal letter of support was sent to the CDC Maintenance Committee on cureCADASIL’s behalf.

Janice with Emil Kakkis – President EVERYLIFE FOUNDATION