charities for rare diseases

A rare disease diagnosis can change everyday life for an entire family. Along with concerns about treatment and care, there may be difficult questions about what the condition could mean in the years ahead. This becomes especially hard when the disease is serious or may affect life expectancy. Some rare diseases have little effect on how long a person may live. Others are more difficult to manage and can cause serious health problems over time. Much depends on the disease itself and which parts of the body it affects. Conditions involving the heart, lungs, or brain, for example, may need closer medical care. For families, understanding the individual condition is far more useful than trying to conclude the term "rare disease" itself. Why Some Rare Diseases Are More Serious Than Others Rare diseases are not one group of illnesses that behave in the same way. They include many different genetic, neurological, metabolic, immune, and other conditions. How serious a rare …