Across the U.S., members of patient advocacy groups are seeking to obtain proclamations supporting Rare Disease Day from their governors. If you obtain a proclamation or official letter from your state, please notify NORD immediately so that we can indicate this on our map.

If possible, please share news about the proclamation with any media contacts you may have in your state. (NORD will also try to notify reporters in your state, but it’s helpful if someone living in the state does so.) Feel free to provide any information from the press kit to reporters, and to include information about the specific disease or organization of interest to you. Mail the proclamation or letter to NORD so that we can display it with all the others at events during the year. (Be sure to include your name, and the organization you represent, when you send it to us.) Mail proclamations to: Information Services, NORD, PO Box 1968, 55 Kenosia Avenue, Danbury, CT 06813.

Fifty-four children around the world have been diagnosed with the extremely rare "rapid aging" disease, progeria.  However, experts believe there are approximately 150 additional children with this disease. A global campaign has been launched to find them.

The Progeria Research Foundation has launched a global campaign to ensure that all children with progeria have access to the vital treatments and support they need as quickly as possible. All who read this story should share it with their communities. Anyone who knows a child with progeria-like characteristics should contact the Progeria Research Foundation at info@progeriaresearch.org.  To learn more about progeria, its link to heart disease and normal aging, and the "Find the Other 150" campaign, go to www.findtheother150.org.

"The Rare Disease Day campaign provides a tremendous opportunity for us to find these children, who have such a similar appearance. Once people see our site, they can more easily recognize the disease," says Audrey Gordon, Executive Director of the Progeria Reserach Foundation. "So the more viral we can be, the more likely we are to find all the children."