Guest blog post by the National Organization for Rare Disorders.
Only a few hundred of the nearly 7,000 rare diseases have approved therapies. Many are not being studied at all by medical researchers.
Often, patients – or parents of patients – feel that nothing will be done unless they raise the money, recruit the researchers and fuel the search for their own lifesaving treatment. They find themselves in a race against time, since rare diseases tend to be serious and many are life-threatening.
To promote awareness of these and other rare disease challenges, the National Organization for Rare Disorders (NORD) hosts a national website where all patient advocates can find ways to show their support for Rare Disease Day.
You can help by getting involved in any of the following activities:
NORD and ABC News to Host a Tweetchat
NORD and ABC News’ Richard Besser, MD, will host a tweetchat on “Conquering Rare Diseases” on Tuesday, February 25, from 1 to 2 p.m. ET. NORD medical advisor Marshall Summar, MD, will be a special guest. Use #abcDRBchat to join the chat. Click here for more information.
Help Educate Your State Officials
Since many important health care decisions are made at the state level, NORD is helping organize “State House Events” to educate state legislators, their staff members, the media and the public about rare disease issues. Find out if there is an event planned in your state. If not, write to NORD at firstname.lastname@example.org. There may still be time to do something.
Submit a Photo to the Handprints Across America Gallery
Free resources to download from the Rare Disease Day U.S. website include a press kit, social media badge, countdown device and flier with the Rare Disease Day logo. One easy way to show your support is to download the flier and submit a photo of you or your group to NORD’s Handprints Across America gallery.
Host an Event at Your School, University or Company
Click on your state on the U.S. map to find out what other events are taking place, such as the annual Rare Disease Day observance at the National Institutes of Health (NIH) in Bethesda, MD. If there’s nothing near you, plan your own event and submit it to the website so that others can learn about it and participate.
Join NORD’s Campaign to Write to State and Federal Officials
Watch for news about a campaign to write to all state and federal officials to alert them to rare disease issues and challenges. NORD will provide basic information that you can tailor to your specific message and submit to your elected officials.
Your Voice Will Be Heard and Your Support Will Be Appreciated!
Rare diseases are an important public health challenge, but patients and families often feel that they are isolated and forgotten. Help NORD show them they’re not alone by supporting Rare Disease Day 2014!