Sometimes we all need is a little Perspective
Through a lot of research, and a tremendous amount of frustration, came the realization that there was no one place to go for information, updates, or tips for those with rare diseases. A disease is considered rare when it affects less than 200,000 people at any one given time. Compounded by the fact that there are over 7,000 diseases considered rare, the struggle is very real for those who suffer or even for those who support someone with a rare disease.
So this begs the question, where can information be found?
As of now, there is a lack of scientific knowledge and quality research on each disease because of the low numbers of those affected. With little funding and less than ideal research, even what information can be found it may not be useful. This lack of knowledge and research negatively impacts rare suffers because they often receive inequalities in the health care system and face many barriers in accessing appropriate treatment and care.
Because of all of these issues, RARE. recognizes the importance and urgent need for information, support, and guidance through the health care system, tips on general wellness through the journey, and information for care givers.
RARE. Perspectives will synthesize the newest research, give tips, highlight important organizations, and will be your place to bring it all together for you.