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February 29th 2024 marks the seventeenth Rare Disease Day
Our events during 2024 Rare Disease Day will focus on spreading awareness about our condition and enlarging the number of patients who participate in the BCM Registry at www.BCMRegistry.org. This year we are recommending all BCM family participants to take two actions:
1) First Action:
We all know that, because of the fact that BCM is a rare genetic disease, most clinicians do not know enough about it, leading to a long time between detecting symptoms and determining a correct diagnosis.
Although we are rare, we still have the power to help improving this. That is why, on the 29th of February, we invite each of you to contact 5 local ophthalmologists in your area and mail or email them the flyers you can find on the left.
With more than 200 families involved in BCMFF, we can reach in 1 day 1,000 doctors worldwide!
A) Download the Flyer RDD 2024 and the Brochures here on the left;
B) Select 5 local ophthalmologists;
C) Before February 29th, send the flyers via e-mail or via mail to your chosen Hospitals/Ophthalmologists or go visit them;
Not sure how to contact or where to find information on local ophthalmologists? Check the AAO and AOA pages here!
https://secure.aao.org/aao/find-ophthalmologist?zip=20028
https://www.aoa.org/healthy-eyes/find-a-doctor?sso=y
2) Second Action:
Blue Cone Monochromacy is a rare disease. In each country, state or region there are only few people affected.
We can fight against this disease by concentrating information about our disease and ourselves in a single registry, www.BCMRegistry.org
Today prepare your family pedigree and, if you have tested your DNA, enroll in the BCM Registry: it is the best way to succeed against BCM! Find here how to prepare your family pedigree: Pedigree Explaination2a . Send an email to registry.manager@bcmfamilies.org for more information.
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