Coeliac Society in Bulgaria

The My Bulgaria/BGAid registered charity is now closed however this forum remains open for any announcements, news, updates and questions on other charitable initiatives and causes.

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SillyYak
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Coeliac Society in Bulgaria

Postby SillyYak » Mon Jul 30, 2007 8:51 pm

The Coeliac Society here in BG has folded. (it was useless anyway, no website, no message board, no mail was ever answered even with an SAE and written in Bulgarian).

If ever a country needs one it's here. The doctors here informed me when i took my Coeliac husband in to hospital 2 days ago that they have, "lots of Coeliac children in Bulgaria but we do not have Coeliac adults"!!!! 8O 8O 8O

This is VERY alarming as Coeliac Disease is an incurable lifelong condition and hereditary, we don't 'outgrow' it. Up until 10 years ago it was thought to be a childhood condition in the UK too, and was supposedly very rare (1-1000 people), now we know it's 1-82 in Europe and the Bulgarians eat a LOT of bread and pizza and use a lot of dairy products, i see a lot of people walking with sticks here and obviously arthritic, this is symptomatic of CD. They are going to be dying early and undiagnosed, the likelihood is their children will die early undiagnosed too. We need to raise awareness over here and supply a Bulgarian Message board and website like the one we still run in the UK (it has 10,000 hits a day). At present there is no communication between Coeliacs in Bulgaria, and none between Bulgarian Coeliacs and the outside world. This is not good.

We have decided if anyone can take the job on it's us. We ran the Coeliac Awareness Charity in Britain until we gave it to Coeliac UK to take over.
Does anyone know how i would go about applying for non profit making Charity status for this kind of thing in Bulgaria? I do not want a British based charity as we live here full time and what would be the point? Any pointers in the right direction would be gratefully received.

On another note (kinda) to the Coeliacs that use this board you can go to Aptekas here now and ask for 'hrani bez gluten'. This is what the specialist told me, that we CAN get gluten free food here but not from all chemists.
Cassie
Last edited by SillyYak on Mon Jul 30, 2007 8:58 pm, edited 3 times in total.

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Postby scot47 » Mon Jul 30, 2007 8:56 pm

You have to register. Accounts, minutes etc should all be in Bulgarian. I think you need legal advice and some Bulgarians to participate.

It can be done. Diabetics in BG have a well-established network of self-help socities. You may find that there is support available from the EU.

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Postby SillyYak » Mon Jul 30, 2007 9:04 pm

Nice one Scot. How quick are you? I'd barely typed... :D

I've already contacted the AOECS and will email my lawyer tomorrow regarding setting up a charity, if there are any lawyers who use this board can they contact me if they can help?

I will need a translation service too so that the whole website will be bi lingual. I think as Bulgarians become more 'high tech' they will 'google' and find us just like the Coeliacs in the UK find the UK site. The average age for diagnosis in the UK is mid 40's, i don't know how many high tech 40+ Bulgarians there are but i'm sure that number will grow over the years.

I can also leaflet major gastro's and hospitals with up to date statistics and symptoms and diagnostic procedures, that will hopefully get more people diagnosed, once diagnosed they will need advice. Even in the UK doctors often give incorrect advice which means the average time for diagnosis in the UK is 13 years !!!

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Postby scot47 » Tue Jul 31, 2007 4:46 am

Publicity is what you need.
Newspapers - "Trud" and "24 Chasa"
Bulgarian TV

How will you finance this ? Good translators do not work fof free. Do not be tempted to try machine translation by computer. The result is always a mess.

Maybe some of the pharmaceutical companies would fund you ? With strings I suspect.
Last edited by scot47 on Tue Jul 31, 2007 5:19 am, edited 1 time in total.

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Postby SillyYak » Tue Jul 31, 2007 5:17 am

I'll be funding it Scot, I did the UK one.

Was thinking about the media this morning. Am busy compiling 2 leaflets for translation with a team of Coeliacs in the UK:

1) For the medical profession with:
up to date stats,
latest diagnostic procedures,
up to date symptoms (it was thought only underweight children had it and got 'cured' as they got older but the symptoms return in the 40's and the damage is then already done.)
follow up treatment
Connecting medical conditions, Diabetes 1 and 2, Autism, anaemia, schizophrenia, liver probs (my mother died of this one, only drank at xmas), osteoporosis, bad teeth (low tooth enamel) diahorrhea, constipation, obesity, low weight gain, sickness, headaches, poor vision, infertility...... etc
The address and online resource for the European Coeliac Association which is amalgamating all the Coeliac Societies in Europe

2) One for possible Coeliacs with:
Symptoms
what to ask for to find out
what not to do (go gluten free before diagnosis)
getting the whole family tested
where to get GF food
recipes
where to eat out and what to ask for
what products with hidden gluten (like soy sauce which has barley in it)
connecting conditions
the codex alimentarius situation

These need to be precise (attention span of coeliacs and busy doctors !!!???) easily printed on one A4 page and translated and thrown at newspapers, radio, tV, hospitals, doctors/dentists surgeries etc. I did this in the UK and got Woman magazine, Daily Record 2 page spread in Scotland and a John Peel interview. Just gotta hot up on me Bulgarian double quick.
:D
Have tried to find the diabetes society in Bulgaria via google but can only find UK based groups. They won't be able to help me with helpful tips on getting a charity started here.

The fact that there are so many blind children here also confirms my belief that CD (coeliac disease) is rife in Bulgaria, one of the main symptoms of CD is Diabetes in untreated CD.

All good fun. Have barely slept for thinking about all the things that need doing. Luckily Frank (Tocherburn) is a website designer and will sort all that side of it so if Bulgarians google in Tzoliakia............. and i can touch type Bulgarian now so once the translations (NOT from PC) 8O are done i can make a bi lingual site (primarily Bulgarian). Any Bulgarians out there want to help me get started, i will take any free advice as i have a feeling that i'll be spending a lot getting this all set up.

Will need a logo too so if anyone is bored..........I have the Silly Yak trade mark registered in the UK because Silly Yak sounds like Coeliac but out here!! Are there any Bulgarian words that sound like tzoliakia? that will get a visual message across?
I guess a BG flag with a grain of wheat on it and a red slash through it may work like the CUK logo in the UK. Image this Finnish Society logo is the same logo as the UK one so i guess something similar will 'connect' the BG coeliacs to Europe.

If you've got any more ideas of getting the word out there let me know. Thanks again for the input. :smt100

Incidentally, in the UK only one in 5 of us is diagnosed, so it's worth keeping an eye on yourself and family members. It IS a killer condition, NOT a food fad.[/img]

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Postby morgan » Tue Jul 31, 2007 8:41 am

Thanks Sillyak for all the info on symptoms. Had gut problems for all my life and only found relief when off wheat. Doctor sceptical but agreed I should try leaving wheat out of my diet. Then 3 weeks later he did the test and of course it was negative. No further action!
Wish you every success with your venture.

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Standing on street corners in Bourgas plyin' me wares.

Postby SillyYak » Fri Aug 31, 2007 2:03 pm

OK ,
Trud and 24 Chasa are on the list of things to do next now i've found the most marvellous translator (cough) :wink: and a lawyer who is setting it all up over a 3 month payment plan for me. What i need to do now is GET THE WORD OUT using the newspapers but also good ole footwork.

I'd very much like to get 'out there' into the streets (pref Alexandrovska in Bourgas for a first time) with leaflets and photos etc but wonder how i'd stand legally. I'd not be asking or receiving donations as i'm not 'official' yet so i wouldn't be begging. Just handing out free information.

Anyone done anything like this? Can you get arrested? Did you need to apply for any kind of permissions first and from what authority?



Morgan, get back on the gluten and get diagnosed for good and always, and have the rest of the family tested BEFORE a gluten free diet is started :wink: best of luck.

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Postby TocherBurn » Fri Aug 31, 2007 3:00 pm

MORGANI can’t believe they told you t stop eating wheat then they tested you for coeliac disease, how backward some doctors be, get tested properly now

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Postby gremlinuk » Fri Aug 31, 2007 3:19 pm

I too was diagnosed as one of those a few years ago, although it doesnt seem serious i was ill all the time, at the time my job was busy working in and out of the UK in IT.

After keeping away from wheat, pasta, Oats and the likes, all the places where there is Gluten, my symptoms (You dont want to know) do not exist. I used to feel lethargic all the time, and had other issues.

I now have rice bread and all the alternatives.

If people follow the rules, providing they do not veer away from these (There is Gluten is a lot more products than people think) there should be no symptoms, often other problems go away too.

OK, im in on this group, although i have no symptoms now im happy to give advice and participate in discussions with other fellow wheat and Gluten avoiders!

BTW heres a couple of interesting links:
http://www.celiactravel.com/gluten-free ... arian.html

tzolakia

Cheers
Aaron

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Postby Adolf » Fri Aug 31, 2007 4:46 pm

The Bulgarian Center for Not-For-Profit Law (BCNL) has an excellent site in English here

http://www.bcnl.org/pageen2.php?p2=19&sp2=76

There doesn't seem to be any Bulgarian nationality requirement to establish a not for profit organisation in BG. The number of people you need is given in the site.

Your lawyer will be able to tell you whether you need a permit under the folowing Ordinance (I know of no express EC Treaty right to go to another country and set up a charity type organisation):-

ORDINANCE № 1 OF AUGUST 15, 2002 FOR THE CONDITIONS AND THE ORDER OF ISSUING PERMITS FOR CARRYING OUT NON-PROFIT ACTIVITY BY FOREIGNERS IN THE REPUBLIC OF BULGARIA

That's on the site as well.


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