Cystic Fibrosis

Posted by edilawar @edilawar, Jan 5, 2017

Greetings everyone!

I a father to a 1.5 year old son who is suffering from Cystic Fibrosis (a very rare condition in Asia) with no specialty clinics or doctors available. I was wondering to get some help to find any kind of organization to include him in the medicine trials or any other option to ensure that he is provided the available treatment for all CF patients in world.

I would also like to take him to US or Europe for check up and treatment plan while I will not be able to pay for the treatment costs while we can afford the travel and accommodation costs for the duration.

Any kind of guidance will be appreciated.

Thanking you,

Ehsan

Interested in more discussions like this? Go to the Lung Health Support Group.

Colleen Young, Connect Director | @colleenyoung | Jan 5, 2017

Welcome to Connect, @edilawar.
You will find information about Mayo Clinic for international patients here http://www.mayoclinic.org/departments-centers/international It also includes information about financial services http://www.mayoclinic.org/departments-centers/international/financial-services

Please meet @vivian88. While she doesn't have cystic fibrosis, she can share her experience of travelling from Asia to Mayo Clinic in the US.
Here is more information about Cystic Fibrosis care at Mayo Clinic http://mayocl.in/2hYyfbx

I hope this helps get you started.

Mamacita, Alumna Mentor | @mamacita | Jul 25, 2018

@edilawar , hello! I am@mamacita with Mayo Clinic Connect, a volunteer mentor. I do not have Cystic Fibrosis, but some dear friends of ours have several children with the condirion. I recently spoke wirh them, explained about Mayo Clinic Connect, and told them I wanted to see if there was a support group on here for Cystic Fibrosis. And so, I found you! I will also connect with our Director to see if there are anymore sites that might be helpful to you. I admire so much your efforts to help your child. It shows that we all love our children in the same language. Loving is doing and caring. If you would like to tell us more of your story, I have a wonderful family just waiting to share there experience, strength, and hope with you. Sometimes it is good to just know and hear from ones who are going through the same things as we are.

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