It seems there is a cause for everything these days. The next 2 months alone offer observances like National Penguin Day, League of Nations Day, and Thank a Mailman Day, just to name a few. It can provide for plenty of giggles on morning radio shows, and great treats on special occasions like National Donut Day. Yet, some days really stand apart from others in their importance.
For a number of years now, Snappin' Ministries has been a partner and ambassador for World Rare Disease Day. While there are individual days, weeks, or months to bring awareness to serious diagnoses like diabetes, epilepsy, Down Syndrome, and spina bifida, World Rare Disease Day encompasses them all.
- Rare disease has a huge financial impact on the family.
- Insurance does not handle every expense involved with a rare diagnosis. For example, different types of medical equipment may not be covered. There are also ancillary expenses involved, such as added fuel costs and convenience foods because the family is too rushed or exhausted for regular meals. These things all strain the family wallet, adding to the pressure of such conditions.
- While benevolent people are inclined to help families with a transient catastrophic diagnosis like childhood cancer, rare disorders are largely incurable and thus, chronic. What this means is that families often need years of benevolent care, encouragement and aid.
We hope you join us this February 28, 2014 to observe World Rare Disease Day where you are. Keep up-to-date with what we are doing via our Facebook Event. Plug in to even more information on the Rare Disease Day US website or at The Global Genes Project. With nearly 6,800 different rare diseases now identified, affecting almost 1 in 10 individuals, there is a tremendous need for us to be wise stewards of the knowledge God has given us, bringing people together in compassion and hope.
PRAY: Father, thank You that each of us is a precious, rare creation whom You love boundlessly. Help us to share that love by building awareness of the struggles that families living with a rare disorder face. Make us each an inspiring motivator to serve just as You served, Jesus. Pour out your infinite mercy, compassion and hope on those who are challenged by the difficulties of rare disease.
~ Barb Dittrich