Make the difference and make it now !
We need financial support to keep the Registry alive in order to cover the cost to host, run and maintain the Registry, its website and its software and to pay the Data Protection Officer.
The Registry is an essential tool to foster the research towards a cure. Blue Cone Monochromacy is a rare genetic retinal disease affecting only 1 person out of 100,000 and, at present, has no cure. The low number of patients, scattered around the world, makes it very difficult to develop innovative disease-modifying therapies. The BCM Registry is a critical tool to bridging the gap, not only between patients, but also the research community, made all the more important since it is a rare disease. Through the organized collection of patient data and bringing patients and medical professionals together, registries increase knowledge of the disease and facilitate basic, clinical and epidemiological research. It is also crucial in the planning of social and health services and ultimately for improving the patients’ quality of life. Help us to keep it going!
How can you help?
You can help the BCMFF keeping the Patients Registry by:
- Donate to the BCMFF;
- Organizing your local event and raising funds. You can reach to our Ambassadors for ideas and help – Ambassador web page – Toolkit webpage;
- Set up your fundraiser on Facebook;
- Contact us for more ideas! – Email us at info@bcmfamilies.org
From February 28th – Rare Diseases Day – to May 20th – BCM International Awareness Day – participate to the Campaign in favour of the Blue Cone Monochromacy Registry!
