When: Monday, April 22, 1:00p.m. – 2:00p.m. ET
Tweetchat Hashtag: #lovingrarechat
Tweetchat Moderator from NORD: @RareDiseases
Tweetchat Moderator from Texas Children’s: @TexasChildrens
As a part of NORD’s mission to improve the lives of the 25-30 million Americans impacted by rare diseases, we are honored to be hosting the 2019 Living Rare, Living Stronger Patient and Family Forum
. Happening June 21-23 in Houston, this Forum will provide a valuable opportunity for patients and families to gain practical tips on living their best lives with rare disease, including how to manage their changing relationships with loved ones.
To give you a sneak peek into the content provided during the conference, NORD and Texas Children’s Hospital will host #lovingrarechat, a tweetchat all about rare relationships, raising a rare child and caring for the other children. This topic will be discussed as part of one of the Forum’s four tracks, “Loving Rare: Caregiver Education and Coping.”
We invite patients, caregivers, family members, friends and supporters to join us during #LovingRareChat to discuss this important topic and to address any questions that you may have.
Help Promote the Chat
We invite you to share this information through Twitter, Facebook, Instagram, LinkedIn, newsletters, email blasts or any other communications channels you use. Everyone can participate! If your organization is interested in promoting the chat and receiving the questions in advance, please reach out to [email protected]
How to Participate
The only thing you need to participate is an active Twitter account.
- Join the tweetchat by logging in to Twitter. Enter into the tweetchat at 12:50p.m. ET on April 22. Search for the hashtag #lovingrarechat. You can also join the chat by logging into the Twitter management tool that you prefer, such as www.tweetdeck.com or www.tweetchat.com, and search for #lovingrarechat.
- Once you are signed in, you are welcome to tweet comments, facts, images, videos, and ask questions as often as you like.
- Remember to use the hashtag #lovingrarechat in all of your tweets. Doing so will link your tweets to the conversation and other content being shared.
- When responding to a question, include the letter “A” (for answer) followed by the number of the question that was asked.
Example Question 1: Q1: How has having received a rare disease diagnosis impacted your relationships? #lovingrarechat
Example Response 1: A1: After receiving our diagnosis, our world centered around this condition and our child, making other relationships take a back seat. #lovingrarechat