Rare Disease Day US » Take Action Now

Become a Partner

dsenseney — Thu, 05 Nov 2009 23:55:54 +0000

Your patient organization, government entity, medical or other professional society, or company can support Rare Disease Day by becoming a Partner. This means that you:

Support the theme of the day (that rare diseases are an important public health issue)
Agree to promote the day through whatever means you have, such as posting the logo on your website or in your publications
Agree to observe the day in the non-commercial spirit in which it was intended
Join us in celebrating the unique partnership between rare disease patients and researchers, and the need for more research to develop safe, effective new treatments

You’ll receive helpful tools

As a Rare Disease Day partner, your organization or company will receive helpful tools created by NORD such as a press kit, stories and photos to share with your members or employees, and regular email blasts to let you know what other partners are doing.

To become a Rare Disease Day Partner, fill out and submit this form.

Tell Your Story

dsenseney — Thu, 05 Nov 2009 23:54:16 +0000

Reading about the experiences of real people helps others understand what it’s like to have a rare disease. If you would like to share your story, send a few paragraphs or up to 500 words to NORD at rarediseaseday@rarediseases.org. We can’t guarantee it will be published but we will share as many of these stories as possible on our own website or through other media.

Write Your Governor

dsenseney — Thu, 05 Nov 2009 23:54:01 +0000

Proclamations supporting Rare Disease Day were issued in 39 states in 2009. Requests for such proclamations must be made by someone (anyone!) living in the state. NORD is grateful to its Partners for all their hard work in getting these proclamations last year.

We’re starting to receive proclamations for 2010. The Amyloidosis Support Groups obtained a proclamation from Governor Pat Quinn of Illinois. See what your state is doing to support Rare Disease Day 2010.

Please feel free to use the following tools to contact your governor or state legislature.

Sample letter to governor

Sample proclamation

If you get a proclamation — let us know!

Take Action Now

dsenseney — Thu, 05 Nov 2009 23:53:05 +0000

The purpose of World Rare Disease Day is to harness the creative energy of the millions of people around the world with rare diseases — as well as that of all the people who care about and assist them — to help others understand certain fundamental issues that need to be addressed.

Rare Disease Day is a grassroots activity. This means you can help us achieve the goals of the day from wherever you happen to be. You don’t have to travel to Washington DC. You don’t have to have special skills or spend a lot of money. And you can start right now.

Make sure your state is supporting Rare Disease Day. You can Write Your Governor with three easy clicks. Not sure if your state is already a supporter? Find out by checking What’s Happening In Your State.

Become a Rare Disease Day Partner (for organizations, agencies, societies, and companies)

Partner Information Form

dsenseney — Sun, 04 Oct 2009 21:53:45 +0000

We’re grateful to all of our Partners for joining us to celebrate Rare Disease Day 2010.

It’s never too early to start planning for 2011. You can still sign up for the Rare Disease Day Partner email list. If you’re a representative of an organization or company, sign up here:

If you’re an individual who would like to be more involved with Rare Disease Day, join using this form (use the optional “Reason” field to briefly tell us why you’re interested):

Name:		Check the box below to also receive NORD’s monthly newsletter. It’s loaded with information and news about rare diseases.
Email address:
Organization/Company:		Send me your monthly email newsletter

Name:		Check the box below to also receive NORD’s monthly newsletter. It’s loaded with information and news about rare diseases.
Email address:
Reason:		Send me your monthly email newsletter