Topic: wish we had this in iran

hi

i have to say although it is hard to me to understand your language and also it is hard to write a post because my English is not very well but i love to write and read your posts and i love your supports and i love you helping each other   
i wish that we had such a good forum in Iran. i love to meet you all. i think it is very helpful to us to gather and have fun.

congratulations

best regards,
Amir

Re: wish we had this in iran

Thank you so very much Amir. I think your English and your writing is excellent. You are a very welcome addition to our family.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: wish we had this in iran

Amir....I agree with Lainy.  Language skills have yet become an issue for you, us and everyone else joining this forum.  This disease has no borders and neither does this site. 

While attending numerous, numerous medical conferences including, those held in foreign countries, the issue of expanding this site has come up frequently.  The Cholangiocarcinoma Foundation is very much in favor of doing so however; we are hindered by the logistics of it all. 

Questions we are pondering: who will lead the discussion forum?  Moderators make a huge commitment to the patient community at large and often times, as we see in our case, patients, while navigating their own illness, offer their skills, expertise and experiences to help others navigate this difficult disease.

Those that are caregivers to loved ones (excluding the current moderators) most likely withdraw from communicating for one reason or another when and if the medical situations changes.   

In contrast to the US where "advocacy" for various causes is hailed, supported and respected, various, other countries are stifled by their cultural and political believes and their various regulations.

We have witnessed this recently at the European Congress for Cancer where   Patient Advocates were not allowed to enter the exhibit hall.  Entrance was denied due to the Trade Protection of the European Union.

Given the rarity of occurrence of this disease, patients and caregivers often are isolated, lost, bewildered and frightened and discussion forums, such as ours rarely expand beyond a handful of people. 

Having said all of the above, I strongly believe that we can continue to change the world of Cholangiocarcinoma.  We must find a way to implement the changes needed and unite the global patient community in order to facilitate improved interactions for patients and caregivers touched by this cancer. 

We welcome any thoughts and suggestions because; together we can make the difference.

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: wish we had this in iran

Amir,

If only I could write your language as wonderfully as you express your thoughts and write in english.

I wish for you that there was a site that was in your native language, but for now, you do just fine.

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.