Marching to Rare Disease Day

Yesterday, I sent a request to Governor John Hickenlooper, to declare February 29, 2012 as Rare Disease Day in Colorado. Getting your governor’s proclamation is important because it raises awareness about orphan disorders like ours. It was actually pretty easy, but it would’ve been even easier if I’d known a couple of things beforehand. Today, I hope to help you with your request.

1) Below is a select list of governor’s web sites. Use Google or GoodSearch to find your state governor’s web site if not listed here. There you will find the mailing address and contact numbers. This is the best way to submit a formal request. Here is a downloadable letter that you can customize and mail.

2) On the “Contact the Governor” web page, search for a “Proclamations” link where you can submit your request online. Copy and paste the language from link below, as they probably will not let you submit the letter as an attachment. They also may ask for some information, such as:

  • Information about the requesting organization. I typed in: The MdDS Balance Disorder Foundation is dedicated to promoting education and research on Mal de Débarquement Syndrome (MdDS). We are an all-volunteer 501(c)3 nonprofit dedicated to promoting awareness of MdDS and to seeking treatments and a cure for people suffering from this rare disorder in Colorado [insert your state] and around the globe. www.mddsfoundation.org
  • Purpose of Proclamation. To raise awareness about rare diseases such as Mal de Débarquement Syndrome among citizens of [Your State].
  • Draft Language for the Proclamation. Here is a downloadable document with sample language, provided by NORD/EURORDIS (National Organization for Rare Disorders and Rare Diseases Europe).

Select List of Governor’s Web Sites

Arizona – online; requests must be submitted 6 weeks in advance.

California – issues Commemorative Messages not Proclamations.

Georgia – should be made 45 days in advance.

Illinois – generic contact form. Probably best to mail the letter in.

Indiana – requests must be submitted 6-8 wks in advance, using the electronic form; phone, fax and mail requests will not be honored.

Massaschusetts – You must submit your request no later than February 1st. Please email your request, along with suggested language and background materials, AT LEAST 20 BUSINESS DAYS BEFORE THE PRINT OR EVENT DEADLINE to constituent.services@state.ma.us, by fax 617-727-9725, by U.S. Mail to Governor Deval Patrick, State House, Boston, MA 02133, or call 617-725-4005 to speak with a member of Governor Patrick’s staff.

Minnesota – download the proclamation request form

New Mexico – online request form

New York – call or write the governor

North Carolina – requests should be submitted 6-8 weeks in advance

Oregon – proclamation guidelines state that 20 days for processing is required.

If you need help finding and contacting your governor’s office, let us know. Together we’ll figure it out. Some states need up to 2 months to process a request, and we are already behind the 8-ball! So… let’s get Marching!

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Rare Disease Day was first observed in Europe in 2008. It was established by EURORDIS, the European Rare Disease Organization. In 2009, EURORDIS asked NORD to be its partner in this initiative and to sponsor Rare Disease Day in the United States. Now, the concept is rippling out around the world. In 2011, over 60 countries participated.
Each year, World Rare Disease Day will be observed on the last day of February (Feb. 29 in leap years and Feb. 28 in other years). Our goal is to draw attention to rare diseases as an important public health issue that cannot be ignored. To learn more about the global initiatives supported through Rare Disease Day please visit www.rarediseaseday.org.

Marching to Rare Disease Day was last modified: February 4th, 2018 by MdDS Foundation

5 comments

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  1. I received a PDF of the Proclamation issued by the State of Colorado today. It’s all fancy with gold letters and an executive seal!

  2. Terri G.

    I have submitted the request for a proclamation from Governor Rick Perry of the great state of Texas. I have received a response from his Constituent Office that it will be processed. Hope to see all of the states represented this year in our March to Rare Disease Day.

    1. We’d love to see a picture of you holding your Proclamation! NORD also wants to see you and how Rare Disease Day is spreading across the US. They invite you to print out a Hands Across America flyer and to take a picture of you holding it up, anywhere in the US. If you’d like, your picture can appear in the Gallery on the Rare Disease Day US website. Here is the link to the site where you can download the flyer, and also submit for a chance to win an XBOX 360 Elite Bundle! http://rarediseaseday.us/take-action-now/handprints-across-america/

  3. This has been a very successful awareness campaign in the past, let’s make it even better this year!

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