Rare Voice Nominees Announced
On Wednesday, November 4th at 6pm, RDLA will hold its 4th annual Rare Voice Awards Gala at the Arena Stage in Washington D.C. View a full list of this year's outstanding nominees! This event is free to attend; to register click here. To check out photos and video from previous galas, click here

Action Alerts

Protect Funding for NIH & FDA - Sign-On to Stop Sequestration

The threat of sequestration, across the board budget cuts to federal agencies, is on the horizon yet again. To date, over 2,000 organizations have signed-on to stop this failed policy. Budget cuts could directly impact agencies like NIH and FDA, which are already signficantly under funded. Click here to read the letter and sign-on. Signing deadline is Tuesday, September 1st.


Save the Date: Day of Action & Virtual Senate Lobby Day
On Friday, September 25th the rare disease community will unite for a day of action to urge the Senate to make Innovation for Healthier Americans a top-priority. Innovation for Healthier Americans is the Senate equivalent of 21st Century Cures, yet the Senate is far behind the House in the legislative process. Our message is simple, patients cannot wait. Stay tuned for more information and updates as the day of action approaches. This will be an opportunity for patient organizations to unite and mobilize to ensure that we get this critical legislation over the finish line. 

Upcoming Events

Hill Briefing: Advancing Neurological Diseases Act
On Wednesday, September 16th, a Senate Briefing will be held on the Advancing Neurological Diseases Act, legislation that will establish a national neurological disease registry. The bill was included in the recently passed 21st Century Cures Act and advocates are hopeful that it will be included in the Senate's Innovation for Healthier American's initiativite. The lunch briefing will begin at 11:30am in the Russell Senate Office Building Room 485. 

RDLA Meeting
On Wednesday, September 16th, RDLA will host its monthly meeting at 1pm Eastern. September is shaping up to be a very busy month for legislation so there will be several bills to talk about. Advocates may join in-person in the DC office or via webinar. Please register using this link

Rally for Medical Research
On Wednesday, September 16th, the Rally for Medical Research will kick off  with a reception in the Russell Senate Office Building at 5:30pm. The following day, advocates will meet with their Representatives to urge them to boost funding for medical research at the NIH and other government agencies. For more information on the Rally and Hill meetings, view their website here. To sign-up for Hill meetings, register no later than August 28th - sign-up online

Annual Childhood Cancer Summit
On Friday, September 18th the Annual Childhood Cancer Summit will convene at the U.S. Capitol Visitor's Center. For more information, visit the Childhood Cancer Caucus website

Global Genes: Rare Patient Advocacy Summit 
On September 24th and 25th, Global Genes will be convening its annual rare disease patient advocacy summit in Huntington Beach, CA. Attendees will learn about research, legislation, and the skillsets needed to build a rare disease organization. For more information and to register, visit the Global Genes homepage

Bio Patient Advocacy
On October 6 and 7th, BIO will convene its annual Patient and Health Advocacy Summit at the Mayflower Hotel in Washington D.C. The Summit is free to attend and will include representatives from over 200 organizations. For more information and to register, contact Gautami Inamdar at ginamdar@bio.org.

Save the Date: Senate Briefing on Innovation for Healthier Americans
On Thursday October 8th, RDLA will hold a lunch briefing in the Senate on the Innovation for Healthier Americans initiative, which is the Senate equivalent of 21st Century Cures. Stay tuned for more details as the date approaches. 


 ***This E-Blast shares action alerts, legislative, and policy news and events from the patient advocacy community. RDLA does not take positions on the issues herein, but serves as a supportive clearinghouse for the rare disease community. Send us an email if you'd like your alerts and/or events included! Email mbronstein@everylifefoundation.org