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Mar. 3, 2020

TOPIC: Patients & Members, Events, Get Involved

NORD Announces Sing Me a Story Raffle for Upcoming Living Rare, Living Stronger Patient and Family Forum

Posted by Valaree DonFrancesco

NORD is proud to welcome Sing Me a Story to the upcoming 2020 Living Rare, Living Stronger Forum in Cleveland, Ohio, where the ideas of children living with rare diseases will be turned into song! This opportunity is supported by Horizon Therapeutics’ #RAREis program.

NORD will spotlight one child’s story at the Living Rare Forum welcome reception on Saturday, July 18 with a musician who will perform a song from this story during our welcome reception. This child will be randomly selected from eligible entries via a raffle, please see below.

In addition, all children aged 3-17 and under attending the Forum will be invited to write and illustrate their stories about anything they want with Sing Me A Story staff. Sing Me A Story will then work to match their stories with musicians to set them to music and make songs of their ideas.

Would you and your child like to be spotlighted?

The Sing Me a Story spotlight raffle winner and up to three family members will receive travel, accommodations and registration to the Living Rare, Living Stronger Forum to experience their story performed live on stage.

To be considered, you and your child living with a rare disease must be available and able to travel to Cleveland from July 18 – 20 for the Living Rare Forum. You must also grant permission to share your story and to be available during March or April for a half-day session for Sing Me a Story and NORD along with a film crew, to film in your home to capture the experience.

The winning family will be selected during a raffle to take place in March.

ENTER THE SING ME A STORY SPOTLIGHT RAFFLE

This raffle has closed for submissions.

 


Editor’s Note: The health and safety of the rare disease community is always our top priority at NORD. With that in mind, the Living Rare, Living Stronger NORD Patient and Family Forum will no longer be held on May 14 -16. NORD tentatively postponed the event to July 18 – 20. This article was updated on Tuesday, March 17, 2020 to reflect these changes.