Summary
- The general public needs to know about this disorder and many of the other orphan diseases. These may not be the most talked about diseases, but its damages still affect those people the same as any other family with a family member who has a disease.
- We should have guest speakers come to provide us with information such as this. I believe they aren’t doing enough because many of the students I have talked to have never heard of the disorder or really any of the other diseases.
- I don’t think very much information is being given to the community about the disorders, especially if someone nearby is struggling with one of them.
- Yes, an organization called NORD, the National Organization of Rare Disorders. NORD is a federation of approximately 140 voluntary health organizations and over 70,000 individual patients, healthcare providers and clinical researchers dedicated to helping the 25 million people in the United States suffering with rare "orphan" diseases. An orphan disease is any disease or condition impacting less than 200,000 Americans.
- Each individual should take the time to learn about these diseases and every once in awhile take the time to do their part and help out for those who need it.
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