Getting funding to research and possibly cure rare diseases has never been the easiest thing for scientists to do. Since some diseases are so rare, they do not get enough public attention for policymakers and private donors to get interested in funding research.
However, there are many wealthy people in the world. Their family members sometimes have rare diseases.
Through foundations, regular charitable giving and estate planning, many of these wealthy people are taking it upon themselves to fund the research into the diseases that their family members have suffered from, as The New York Times reported in "Bringing Family Wealth to Bear Against Relentless Illness."
This can have extremely beneficial positive effects on research into these diseases, especially if a wealthy donor is able to convince other wealthy friends to also contribute.
Research into several rare diseases has progressed greatly as a result of wealthy donors. However, there can also be problems associated with this type of funding.
In an effort to find cures for diseases, some donors have not adequately ensured that proper scientific and medical protocols are followed and have even pushed hard to not have them followed.
Public policy experts also worry that this funding of specific rare diseases can lead to less research into more common diseases that afflict many more people, as researchers are pulled into the funded rare diseases.
Funding research into curing any disease is important, but donors need to be certain they are doing so following proper protocols and the greater interests of the public.
Reference: New York Times (April 28, 2017) "Bringing Family Wealth to Bear Against Relentless Illness."