RARE Project » Vote for Rare Disease

Your vote matters for rare disease!

Catherine Calhoun — Tue, 09 Mar 2010 15:32:16 +0000

Less than 4 days left for the Change.org vote (ends on Friday, March 12). We need to finish in the top 10. Vote today (and every day through Friday, March 12 at 5 est) — and ask family and friends to do the same! You can vote every 24 hours, you may need to clear cookies/history to vote each day.

Vote HERE.

About the vote:

Ideas for Change in America is a crowd-sourcing competition that empowers citizens to identify and build momentum around a diverse range of ideas for addressing the challenges our country faces.

From January – February 2010, more than 2,500 ideas were submitted and voted on by 100,000 people across the country. The top three rated ideas from each issue category, listed below, qualified for the final round.

Final round voting begins on March 1 and ends on March 12. The 10 most popular ideas will be presented to relevant members of the Obama Administration, and Change.org will subsequently mobilize its full community to support a series of grassroots campaigns to help turn each idea into reality.

[Why a registry of registries? It is impossible to study any disease without a registry. These registries cost each of us with rare conditions hundreds of thousands of dollars. Most rare conditions can't afford one. Having these registries make rare disease infinately easier to study, and have the population ready when the time to test a drug comes! This is an essntial step! (by Sharon Terry of Genetic Alliance)]

"Top Ideas" Final Round, Vote for Rare Disease!

Catherine Calhoun — Tue, 02 Mar 2010 16:44:17 +0000

Rare Disease made the final round for the 2010 Change.org Top Ideas Contest. We beat out hundreds of ideas to make the finals and now must reach the top 10 out of 60 final ideas. Voting ends Friday, March 12 at 5 p.m. EST.

This is truly an amazing chance to make rare disease a health priority in the USA (and world). There are more than 25 million people in the USA alone with rare disease with millions of family members touched by rare disease as well.

Please vote at Change.org – http://www.change.org/ideas/view/25_million_it_is_time_to_care_about_rare_disease

You can vote every day through March 12 – ask family and friends to do the same! Every day!

Make Rare Disease a Top USA Health Care Priority, Vote Today at Change.org – 25 Million+, It is time to care about rare disease.

Catherine Calhoun — Mon, 01 Feb 2010 19:41:25 +0000

For the millions and millions of kids and adults, brothers and sisters, moms and dads, families of every sort, friends, doctors, researchers, non-profits, foundations, research institutions, hospitals and advocacy groups,

for everyone touched by rare disease,

put on your blue jeans,

put on your blue jeans denim ribbon, and

vote for rare disease at Change.org – vote here ”25 Million+, It is time to care about rare disease.”

Ask family, friends, and strangers to vote. The first round vote ends at 5 p.m. (ET) on Thursday, February 18, 2010.

Right now we are in seventh place for “health care” ideas, we need to be in the top three ideas to make it to the finals.

Our votes can put rare disease into the top ten real American priorities – I say it’s time, don’t you? Start your World Rare Disease Day celebration today, vote for rare disease as a true health care priority. And pass it on (and on and on).

Catherine Calhoun