#BeRare Essay
Thank you so much for your interest in participating in one of our 2021 Rare Disease Day activities. We are glad you are here! We are inviting those impacted by a leukodystrophy to participate in the #BeRare essay. Krabbe disease is one of more than 50-identified leukodystrophies recognized by the National Institute of Health. Please be sure to read through this page before deciding to participate.
Essay Question: Tell us what it means to you to #BeRare. The essay requires a minimum of 250 words and a maximum of 500 (max) words in addition to the following:
Essay Requirements:
1. You are a patient, and you have been diagnosed with a leukodystrophy.
2. You are a direct caregiver (legal parent or guardian) for an individual with a leukodystrophy.
3. Essay needs to be 500 words or less and answers the question, “Tell us what it means to you to #BeRare.”
4. Essays need to be received on or before Monday, February 22nd, at 12:00 p.m. Eastern Standard Time.
5. Up to 2 photos may be included in the essay.
Rare Disease Day:
3 essays will be selected by the KrabbeConnect Board of Directors on Friday, February 26th, 2021. These 3 essays will be used on social media on Sunday, February 28th, to provide further awareness of Rare Disease Day. The 3 selected recipients will be notified by email and mailed a $25 Amazon gift card for their essay.
Submit Your Essay
Before submitting ensure:
1. You are a patient, and you have been diagnosed with a leukodystrophy.
2. You are a direct caregiver (legal parent or guardian) for an individual with a leukodystrophy.
3. Essay needs to be 500 words or less and answers the question, “Tell us what it means to you to #BeRare.”
4. Essays need to be received on or before Monday, February 22nd, at 12:00 p.m. Eastern Standard Time.
5. Up to 2 photos may be included in the essay.