Tag: national organization for rare diseases


Rare Disease Day: Importance of Fundraising and Research

For some 30 million Americans living with a rare disease is part of everyday life. Many individuals suffering from a rare disease go to sleep and wake up with the same understanding and outlook of the disease as they did the day before, or even years before - there is no reprieve. In the United…

How Patient Advocates can make the most of Awareness Holidays

Raising awareness about a disease or health concern can be an excellent means to foster an appreciation for patients and families, encourage donations to research, or even education about preventative measures. Awareness holidays offer major opportunities to get the word out about a specific disease or overall community. Patient advocates can take advantage of this…
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