Feb 28 is Rare Disease Day – HH is Not Alone

Tags: , , ,

Rare Disease Day

Feb 28 is Rare Disease Day – HH is Not Alone

  • A disease, disorder, illness or condition affecting fewer than 200,000 people is considered RARE.
  • There are 7,000 rare diseases and disorders.
  • 1 in 10 Americans or 30 Million people have a rare disease
  • More than ½ of people with rare diseases are children.
  • Hypothalamic Hamartoma is a rare disease.
  • HH with epilepsy impacts one in every 200,000 children and teens world wide.
  • 300 kids and teens have HH in the US.
  • There are just 30,000 kids and adults living with HH with epilepsy in the world.

Rare Disease Day takes place the last day of February each year. The goal is to raise awareness with the general public and decision makers about rare diseases and their impact on patients lives. 

The theme for 2017 is research! Tell your story and how research has helped or research you hope will get accomplished.  And join ABC News and NORD for the 4th Annual #abcDrBchat Tweetchat from 1-2 pm EST. See Tweetchat instructions below.

Special thanks to Eurodis Rare Disease Europe, the National Organization for Rare Disorders (NORD) for organizing and bringing crucial awareness.

 

abcDRBchat

How to Participate in the Tweetchat

Join the tweetchat by signing in to your active Twitter account.  Enter into the tweetchat at 12:45 p.m. EST on Feb. 28 from the Twitter management tool that you prefer (such as tweetdeck.com or tweetchat.com). Join at #abcDRBchat.  Once you are signed in, you are welcome to tweet comments, facts, images and videos as often as you like.

Remember to use the hashtag #abcDRBchat in all your tweets! Doing so will make your tweets a part of the actual chat.  

When responding to a question, include the letter "T" followed by the number of the question. 

Example Question 1: Q1: How many rare diseases are there?

Example Response 1: T1: There are approximately 7,000 rare diseases #abcDRBchat.

Keep the Conversation Going