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 leukodystrophyThe leukodystrophies comprise a group of progressive, genetic disorders mainly affecting the central nervous system (CNS). Most leukodystophies result from a disruption of the growth of the myelin sh... 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:
- You are a patient, and you have been diagnosed with a leukodystrophyThe leukodystrophies comprise a group of progressive, genetic disorders mainly affecting the central nervous system (CNS). Most leukodystophies result from a disruption of the growth of the myelin sh....
- You are a direct caregiver (legal parent or guardian) for an individual with a leukodystrophyThe leukodystrophies comprise a group of progressive, genetic disorders mainly affecting the central nervous system (CNS). Most leukodystophies result from a disruption of the growth of the myelin sh....
- Essay needs to be 500 words or less and answers the question, “Tell us what it means to you to #BeRare.”
- Essays need to be received on or before Monday, February 22nd, at 12:00 p.m. Eastern Standard Time.
- 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:
- You are a patient, and you have been diagnosed with a leukodystrophyThe leukodystrophies comprise a group of progressive, genetic disorders mainly affecting the central nervous system (CNS). Most leukodystophies result from a disruption of the growth of the myelin sh....
- You are a direct caregiver (legal parent or guardian) for an individual with a leukodystrophyThe leukodystrophies comprise a group of progressive, genetic disorders mainly affecting the central nervous system (CNS). Most leukodystophies result from a disruption of the growth of the myelin sh....
- Essay needs to be 500 words or less and answers the question, “Tell us what it means to you to #BeRare.”
- Essays need to be received on or before Monday, February 22nd, at 12:00 p.m. Eastern Standard Time.
- Up to 2 photos may be included in the essay.