Early October we had a meeting with Global Genes about the RARE-X program. With this program, Global Genes collects data about people with rare diseases, to promote research. Now a RARE-X program for ADOA(-plus) has also started. The Cure ADOA Foundation and the ADOAA support this and call on everyone to participate in this program.
About RARE-X from Global Genes
Global Genes is a non-profit organization that works for people with rare diseases. With its RARE-X program, it collects as much data as possible about people with specific rare diseases, such as ADOA(-plus), to promote research. Privacy and data protection are paramount.
Video about RARE-X data collection for ADOA(-plus)
In October, the Autosomal Dominant Optic Atrophy Association (ADOAA), the American foundation for ADOA(-plus), in collaboration with Global Genes, held a webinar in which the program is explained step by step. Watch the webinar here:
Zoom meeting with Global Genes
If there is enough interest, we will organize a Zoom meeting with Global Genes from the Cure ADOA Foundation, in which the program will be explained again and you can ask all your questions. Global Genes is an American foundation, so please note that the language of the meeting will be English.
Register for the Zoom meeting >
Why your participation in RARE-X matters
By sharing your information in the RARE-X program, you contribute to research in an easy way. You don't have to go anywhere and you have control over who has access to your data. Researchers who get access to your data can then use it to develop new treatments, for example.
- Knowledge about the course of ADOA(-plus)
- Accelerating and improving the research process
How do you participate?
The program will take place online. You can easily register on the RARE-X page for ADOA(-plus). Please note: for now the program is only in English, so you need to be proficient in English to participate. In the future the program will also be available in other languages, including Dutch. We will keep you informed about this.
Questions?
For all your questions, you can contact us or join the Zoom meeting with Global Genes. We are happy to help you if you have doubts about participating, so that we can hopefully contribute to research into ADOA(-plus) together.
