Join Rare Disease Legislative Advocates This Summer to Make Your Voice Heard By Congress

June 10, 2016

Are you interested in learning more about the latest rare disease legislation and how it can help you and your community? How to talk with Members of Congress and get them to understand your needs? Would you like to meet other rare disease advocates in your area?


Regional Legislative Conferences

Please join Rare Disease Legislative Advocates (RDLA) at three regional Legislative Conferences across the country. These half-day conferences will include discussions with federal elected officials, academics, patient advocates and other rare disease stakeholders. They will also provide attendees with the opportunity to network and learn from others in the rare disease community.  Lunch will be provided, and there is no cost to attend.


  • To register for the Northeast Legislative Conference in Boston on June 28th, please click HERE.
  • To register for the Midwest Legislative Conference in Chicago on June 30th, please click HERE.
  • To register for the West Coast Legislative Conference in Seattle on June 30th, please click HERE.


Seating is limited, so don’t wait to reserve your spot! Registration will close June 22nd.


Make Your Voice Heard This Summer

The regional Legislative Conferences will help patients, caregivers and others in the rare community prepare for In-District Lobby Days during the summer Congressional recess (July 18th through September 5th).


In-District Lobby Days will provide you with the opportunity to sit and talk with your Members of Congress about your needs and challenges, and explain what they can do to help you and your community.


Registration for In-District Lobby Days is open through July 1st, and you will have the opportunity to specify your availability so that we can try to schedule the meetings on days that are convenient for you. Click HERE to register.


Informational Webinar to Be Held on June 16th

Do you have questions on In-District Lobby Days or regional Legislative Conferences? Or would you like to learn more? Please join us for a webinar on Thursday, June 16th, at 2pm ET/11am PT for an overview of both programs and an opportunity to ask questions. You can register HERE.

We hope you can join us for the Legislative Conferences and In-District Lobby Days. The more we work together, the greater our impact!

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