With more than 7,000 rare diseases, there’s no one-size-fits-all approach for addressing the health care needs of patients, especially considering the diversity of experiences at the intersection of rare disease, race, gender and ethnicity.
To gain insights from the Hispanic community, the National Organization for Rare Disorders (NORD) is planning eight listening sessions for patients and caregivers. They begin April 22. Half of the sessions will be in person in these cities: New York, Washington, D.C., Lanham, Maryland and Houston, Texas. The other half will be virtual.
“We believe that every person living with a rare disease is entitled to the best health and well-being from it. With that belief as our guide, we advocate and implement solutions that help ease the burdens and challenges facing our community,” the invitation to participate says.
NORD, which has Spanish resources on its website, will use input from the listening sessions to inform future programming and potential solutions to common challenges.
In-Person Listening Sessions:
- Saturday, April 22: New York
- Friday, May 5: Washington, D.C.
- Sunday, May 7: Lanham, Maryland
- Wednesday, May 17: Houston, Texas
Virtual Listening Sessions:
- Monday, May 1: New York
- Monday, May 22: Washington, D.C. Metro Area
- Thursday, June 1: National
- Tuesday, June 13: Houston, Texas
