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WorksheetsRare Disease Day 2024
Total questions: 11
Worksheet time: 6mins
What's a Rare disease ?
condition that is common in the population.
condition that's generally affecting 1 person in 2,000 people.
it's one of the 20,000 discovered diseases.
All of the above.
Rare Diseases definition varies from country to country:
in USA, it's 1 in 200K
in the UK & Japan it's 1 in 50K.
In Bahrain, we'll know inshallah upon establishing our Rare Disease Registry.
all of the above
Rare Disease :
70% presents in childhood age.
average years for reaching a diagnosis is 1-2 years .
all cancers are rare.
all rare conditions has a known genetic mutation.
Treatment of Rare Disease :
Could have a possible Gene therapy.
Enzyme replacement therapy.
Surgeries.
It depends on the affected organ/s and the availability of treatment, but most disease have no definitive cure.
Which of the following is a Rare Disease ?
Hypertension
Diabetes Millitus
Neurofibromatosis Type 1
Measles
Why do we celebrate Rare Disease Day ?
Genetic literacy
Raise awareness
show solidarity to those who face a rare condition
Support research, fund for genetic testing and gene therapy accessibility
When do we celebrate Rare Disease Day ?
29 Feb annually.
28 Feb annually.
Last day of February.
1st Day of March.
If you suspect that your colleague has a Rare Condition, what advice will you give?
Search and read on Google.
Go for Genetic counseling.
Post on Ask Bahrain page on Instagram.
Ask the pharmacist in the neibourhood, he will provide guidance for anything.
Genetic testing :
just like blood sugar test, immediate results.
takes 4-8 weeks and requires genetic counseling.
easily accessed.
very cheap.
The National Genome Centre has some projects, that includes :
50K Samples collection for the Bahraini BioBank
Bahraini Genome Program that sequence and analyze 6K at phase 1.
Genetic screening for newborns at GH.
all of the above and more are coming.
The new Machine that the MOH brought to the Genome Centre is called:
NovaSeq X Plus
HiSeq
MiSeq
ThermoFesher
