Hungarian Lupus Group
since 1993.
Introduction
The Gabriella Schopper Hungarian Lupus Group was founded by its denominator in 1993.
Gabriella Schopper had suffered from allergy since her childhood. Later she got steroids due to incipient haemophilia. She was 26 when – in the last period of her problem-free pregnancy – the illness attacked again. Gabriella was living in the United States when it was revealed after approximately one year that behind her accreting complaints there was the SLE. Following the treatments she had become asymptomatic from time to time, while later on periods being full of pains and suffering came. Her marriage got broken because of the illness and finally she made a decision to repatriates to Hungary together with her child. Her American physician recommended to establish a club since all the connection with other patients can help much with bearing the illness in an easier way. She convinced doctors to support them, sought patients, organized meetings, then finally after three years the club formed a group.
It is not an accident that the SLE (Systemic Lupus Erythematosus) patients’ domestic group of interest coalesced with her name: Gabriella Schopper led the group until her death in 2006. She organized patient-appointments, conferences where specialists reported about the recent illness-related information and treatment methods. They published leaflets, worked on internet forum and website, built up connections with international organizations.
Since 10 May, 2004 has become the world-day of Lupus, the Hungarian group also connected to this international initiative. The goal of the annual world-programme is not simply the spreading of the illness-related knowledge, but the raising of the lupus-related research’s financing, and providing the way to make the SLE a public health topic. We call our one-day meeting also as a family day because the illness affects the patients’ close and distant relatives in an indirect way too. The Hungarian Lupus Group attended conventions of Lupus Europe several times, so the European organization of SLE patients and the host of the next congress of Lupus Europe in 2010 going to be Budapest.
Our group has doctor register, leaflet, newspaper, exclusive magazine, DVD release, we maintain good connections with other patient groups, with the media and with some pharmaceutical companies. In autumn 2007, country-wide agencies were established. They are working currently at eleven points in the country. The regional representatives’ task is providing information for the patients turning to them in e-mail, through phone or personally.
After the reestablishment in 2007 – with Zoltán Purgel as chair – the work became easier. We got considerable financial support due to successful applications provided by the Ministry of Health and besides of this we could gain support from other applications, such as from little membership fees, and from the support of tax payers who are able to give 1% of their taxes to different non-profit groups like our one. Using this income one of our early dreams came true: our magazine Pillangó, our press „The Most Important Questions and Answers” could be published; and DVDs that contain lectures given by specialists.
All of the information can be found on our websites (www.hungarianlupusgroup.org, www.lupuszbetegseg.hu, www.lupusbetegseg.hu, www.magyarlupusegyesulet.hu, www.sle.hu, www.lupusz.hu, www.autoimmun.hu) about the Lupus illness, affections of organs and other autoimmune diseases. All of our publications can be downloaded and viewed in electronic format. Our web page is frequently updated with latest news, information. Our forum receives several comments every day; this is the forum by which autoimmune patients can help each other. We are proud of having a web site where our members can view 78 video movies (lecture) on-line; the length of these is approximately 47 hours.
The group established an award in 2009, which got the name of our vice-chair and international contact person, Krisztina Hevér, who died of Lupus at her age of 34. Our group and the Hungarian autoimmune patients can thank her for working so much for the froup. Krisztina did much for strengthening our international relationships. She helped the Hungarian lupus patients with her civil work. Her eminent work is exemplary for everyone. To give a salute to Her memory, we prepared and published the first Krisztina Hevér Award.
Today, the chair of the group is Zoltán Purgel. They work together with at least ten active co-operate members who help them with great enthusiasm. We do our job in a disinterested way, without any payments. Today the group has about thousand members for whom we organize patient-meetings and forums four times in a year. According to the opinion of the members, these meetings provide an excellent way for the patients to leave their living rooms, to have fun and to find friends.
Contact
- Facebook Page: https://www.facebook.com/lupuszegyesulet
- Youtube channel: https://www.youtube.com/LupusHungary
- Facebook group (secret): https://www.facebook.com/groups/kapu.magyarlupusegyesulet/
- Web sites: http://www.lupuszbetegseg.hu · http://www.lupuszbetegseg.hu · http://www.lupuszbetegseg.hu · http://www.lupuszbetegseg.hu · http://www.sle.hu · http://www.lupuszbetegseg.hu · http://www.lupuszbetegseg.hu
- E-mails: ic@lupusz.hu (International contact), info@lupusz.hu (general)
- Phone / fax: +3663364400
Other data
- Founded: 1993.
- International name: Hungarian Lupus Group
- Hungarian name: Schopper Gabriella Magyar Lupus Egyesület
- Hungarian short name: Magyar Lupus Egyesület
- Address: 6635 Szegvár, Kórógy u. 69. Hungary
- Registration number of the Hungarian authority: 7.PK.60454
- Tax number: 18157860-1-06
- Bank Account Number (IBAN): HU96117020122000425700000000
- Bank BIC code: OTPVHUHB
- Bank name: OTP Bank
- Bank address: 1051 Budapest, Nádor utca 16. Hungary
- PayPal e-mail: info@lupusz.hu
Chair: Zoltán Purgel
Presently, I am the chair of the Gabriella Schopper Hungarian Lupus Group.
My illness was diagnosed in 2000. I have been the member of our association since 2002, and I have been taking an active part in the life of this group as its chair since 2007.
When my lupus was revealed, there was no Hungarian information about this disease on the Ínternet. At this time I decided to create a website where all suitable information can be found about lupus. Later on I got to know that in Hungary there was a lupus association led by Gabriella Schopper. I joined this group and I undertook some tasks, e. g. designing their website, the graphic works of their leaflets.
In 2006 I was astonished to hear that Gabriella Schopper, the founder of this group died. I did not know how this association would work on, and I did not want to let „her heritage” loosen. I tried to look for other leaders, but I had no success.
Since there was nobody who would have liked to become the head of the association, we had to congregate a general meeting in 2007 to dissolve its function. In the last moment I offered that if we joined with each other, we could save it. Fortunately, we managed to do it.
We, 12 of us have been maneging the group lately. All of us are working with no payment as a sideline.
Our common aim is to create an associartion with European standard.
My baby born in 2017. I and my wife lives with SLE. My son may be the first child whose two parents live with SLE.
Contact
- E-mail: zoli@lupusz.hu
- Mobile phone: +36303491100
- Postal address: Magyar Lupus Egyesület, 6635 Szegvár, Kórógy u. 69. Hungary
- Private Facebook profile: https://www.facebook.com/purgelzoltan
- Linkedin: https://hu.linkedin.com/in/purgelzoltan
Featured videos
World Lupus Day in Hungary, 2017.
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20 years of the Hungarian Lupus Group, 2013. (with English subtitle)
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World Lupus Day in Hungary, 2016.
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Lupus – As I see it” photo exhibition, 2012. (with English subtitle)
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World Lupus Day in Hungary, 2014.
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Our TV show with House
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World Lupus Day in Hungary, 2010.
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World Lupus Day in Hungary, 2009.
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Pictures
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Lupus – As I See It Photography Competition gallery
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Donate
The Hungarian Lupus Group has been working since 1993.
Unfortunately our association’s incomes were decreased during last few years due to the new regulations of NGO and the narrowing of application and competition possibilities for financial support from the government.
To be honest the group was financially more secured 24 years before than nowadays.
Please support us. You can help us even by 1 EUR.
We have many plans for 2018 that we would like to finance from donations.
- We would like to celebrate our group’s 25th birthday (12 May, 2018) with a whole-day celebration programme including 3 doctor’s lecture. For this occasion we would like to give special gifts to our fellow patients as well.
- We would also like to publish our Butterfly magazine (36 pages in an A4 format for free).
- We are also planning to record videos from doctors during our patient forums and later publishing it on our website.
- Buying a new computer and other fixed assets. (Now we have only 1 laptop that is 24 years old.)
Donation by PayPal
Donation by banktransfer
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Bank Account Number (IBAN): |
HU96117020122000425700000000 |
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Swift / BIC code: |
OTPVHUHB |
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Bank name: |
OTP Bank |
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Bank address: |
1051 Budapest, Nádor utca 16. Hungary |
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Hungarian Lupus Group address: |
6635 Szegvár, Kórógy u. 69. Hungary |
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