Thank You to ALL the advocates that came to DC to participate in Rare Disease Week on Capitol Hill!

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Thank you for attending this year’s annual Rare Disease Legislative Conference in Washington D.C. We were proud to bring together over 300 members of the rare disease community from across the country to share their unique stories, ideas, and make our collective voice heard on Capitol Hill.

Your presence helped to make this event a great success and your enthusiasm and positive spirit helped make our time together both productive and fun.  We want you to continue to be engaged with RDLA and your legislative representatives, so please follow up with the offices you visited (if you haven’t already) and send us stories and pictures of your meetings either by email or use the AdvocacyApp (  Help spread the word with advocates that weren’t able to make our conference by writing blog posts and testimonials, and sharing your photos on social media. Also, we are pleased to let you know that presentations and photos from this year’s conference will be available on our website soon, so stay tuned and stay engaged with RDLA. Throughout the year we have opportunities for advocates to learn about the most recent Rare Disease Legislation (monthly webinars), meet with their representatives (In-District Lobby Days), and celebrate those who have raised the voice of the rare disease community (RareVoice Awards).

If you attended the conference please take a moment to fill out our quick survey regarding your conference experience. Your feedback is critical in our ongoing effort to improve this annual event.

Thank you again for being part of such a wonderful conference experience!