Monday, February 29, marks World Rare Disease Day this year. For the 3rd year in a row, we at Hope Alive Ministry, will be hosting an all day online event via Facebook. If you have a Facebook account, please join us here for our event on Monday, February 29 from 11 AM EST-8:30 PM EST. We will be releasing a slideshow featuring kids with rare diseases and will be posting a special announcement at the conclusion of our event.
Why is raising awareness of rare diseases so important?
1. Imagine having a disease that is so rare there were no treatment options. Through raising awareness of rare diseases, hopefully more people will find out about the disease bringing about more treatment options and potentially a cure.
2. Most (not all) rare diseases are only treatable with early detection (example: Krabbe Disease). Through raising awareness, hopefully more doctors will discover the disease early.
3. Community support matters! Families who have a child or children with a rare disease (our focus is on pediatrics) often feels all alone. Raising awareness helps them to feel that others care too.
*The above reasons are only what we have discovered through years of following these families and listening to what they had to say. They are far from the only reasons awareness of rare diseases is important.
Why is awareness of rare diseases important to you?