International Rare Disease Day

2/27/2014

Tomorrow is International Rare Disease Day, and if you are anything like I was, this kind of day just never got on my radar. Since joining the 'rare disease club' with my son in 2012, I've been shocked to learn how many millions of people live with thousands of different 'rare' diseases that most often have little or no awareness, medical research or funding. This day is meant to give those 'rare' people a day of hope that their condition deserves attention, awareness for earlier and more accurate diagnosis, and hopefully one day soon a cure.

Now my sweet amazing son is facing such a unique challenge, I have met many other families in similar situations. Over and over, I've been awed by the stories of perseverance, courage, faith and love from both the patient and their families. Not that I'd wish this on anyone, but there's some pretty miraculous stuff happening here! So please take a moment to appreciate your health and say a prayer of healing for those living with a rare disease.

Thank you beautiful people!!

50 Comments

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12/4/2016 07:43:22 am

nice post

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5/3/2017 01:24:28 pm

Organizing an event like this is such a great way to spread an awareness to everyone that there's a person out there who's currently suffering from a rare disease and that they shouldn't deserve to be ignored. There's still a huge amount of people who's still unaware that rare diseases exist and that they can somehow help the people who's undergoing on a battle right now. This event could be a possible bridge for them to reach out to everyone and educate them about this kind of issue. I believe that there's still kind hearted human beings out there who's actually willing to donate and help the people experiencing this kind of diseases. I hope you continue to organize such event like this to gather all of the wonderful people to fight this battle together. I also do pray for their fast recovery to continue and finally move on with their lives.

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7/4/2017 12:33:01 am

A beautiful event! This makes those people suffering with rare diseases feel special because they have a day dedicated to them. It's sad how the targets of rare diseases are mostly children. I can't imagine how hard it must be for the parents of these children to see their children being diagnosed with rare diseases. It's hard to think about the many times they forced to smile just so their children would not see them cry. And it's hard to imagine what their answers will be if ever their children asked why they are suffering from such disease and when will they feel better. Having events like this is one good way of showing support to these children.

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2/26/2018 03:44:19 pm

Are rare diseases can not be cured? I do not any idea what are the rare disease. The only thing I know is that rare disease are very difficult to cure. Most rare disease have no cure and some are just in the process but have very low chances of success. I know it is very difficult knowing that your child is experiencing a rare disease but never give up on them. I know that God has his reasons and I know that he will never give you problems that you can not handle.

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12/5/2016 08:41:18 pm

Kids our life and it is best part of our. I thing we can not live without our children but many kids are facing the rare disease. It is too time for parents and we should pray for our children God save us from all rare disease.

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1/15/2017 04:36:41 pm

Now I am informed about this day. I want to support these people somehow.

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5/2/2017 04:51:12 am

I hope we will find the way how to deal with these diseases. It's important for us to do that.

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5/2/2017 05:08:05 am

I wish your son to be happy. And healthy! He worth it!

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6/27/2017 09:40:16 pm

Thank you for this post that reminds everyone that we must be aware of people who suffer from rare diseases. They must not be ignored. We may not be connected by blood but we are the same, created by the one true God. So we must all extend our help and compassion. We must donate funds or raise up funds for these people for their medications and maintenance. Or if we really cannot donate help due to lack of finances, we may support to campaigns and at least pray for these people.

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10/2/2017 02:08:50 am

You need a special care and diet if you are suffering from rare disease.

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Very nice blog. Thanks for share it

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International Rare Disease Day

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