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Dec. 14, 2012

TOPIC: Advocacy, Patients & Members

Campaign to Educate State Legislators for Rare Disease Day

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Each year NORD provides a list of suggested activities for Rare Disease Day. This year, one of those major projects is a nationwide campaign to help leaders of rare disease patient organizations — and those who support them — educate their state officials for Rare Disease Day 2013 (Feb. 28, 2013). The campaign is just one of many activities NORD will oversee as the national sponsor of Rare Disease Day in the U.S.  Rare Disease Day is observed globally each year on the last day of February. Rare Disease Day is truly a grassroots effort and any level of participation is appreciated and encouraged.

It’s become increasingly evident in recent years that advocacy at the national level isn’t enough.  Many issues of importance to the rare disease community are debated and decided at the state level.  Educating state legislators and their staff members is extremely important and the reason we hope these events will occur across the country.

The project is modeled on a successful Massachusetts State House event organized by Blair Van Brunt of the Shwachman Diamond Syndrome Foundation and Sarah MacDonald of the Massachusetts Biotechnology Organization.  Van Brunt and MacDonald are working with NORD to develop resources for people interested in organizing similar events in other states.

Earlier this week, to kick-off this effort NORD, hosted a call with over twenty patient advocates and other rare disease supporters to provide additional guidance on the project. To date, individuals in over 21 states have expressed interest in learning more about how they can plan an event.

NORD will publicize the project through the national Rare Disease Day website (www.rarediseaseday.us).  Individuals interested in organizing events may sign up through the website to receive guidance from NORD, as well as help in connecting with others in their state who have also expressed interest.

Have you seen any examples of significant policy victories for rare diseases patients at the state level? Please share them in the comments!

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