RareBoost wants to establish and maintain a dedicated info-portal on rare diseases, describing what is known about particular rare diseases, the latest findings on them, the ongoing research and current treatment options. This rare-disease info-portal is aimed to be understood by the general public in a clear and understandable manner, without lacking the scientific rigor our experts in the field expect. Although most of this info-portal will be text based, we also plan to include explanatory graphs and videos, webinars and first-hand reports from patients and clinicians. This will be part of RareBoost’s large outreach and education efforts (more details to follow).
Given the large number of rare diseases, this is an enormous task and will require a significant amount of time and effort to complete. Therefore, we thank you in advance for your patience, as we are just at the beginning, and for your help to realise this goal.
We invite patients, patient organisations, clinicians and other people willing to inform the public about rare diseases to work with us. We need your help:
– to compile our info-portal. If you have a text on a rare disease that touched your life and which can help others, please send it to us (ideally with information on the sources you used). We will work on it with our experts and add it to our info-portal.
– to check our info-portal. If you notice a mistake on our info-portal, please let us know.
– to enable our info-portal to be up and running by sending us your stories.
– to help us help you. Do you have any ideas on how we can improve the info-portal or how RareBoost could be of benefit for your life? We would love to hear from you.