Rare Disease Day
28th of February 2015
This year was the 8th edition of the Rare Disease Day. KBD became a friend of this organization which fight to raise awareness of policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
On February 21 st, 2014, the 2 partners, the « Centre for Disease Control and Prevention (CDC) » of the Tibet Autonomous Region and "Kashin-Beck Disease Fund" have signed a new agreement for 3 years. The signing ceremony took place in front of representative of the Regional Public Health Bureau and the Foreign Affairs Office of Tibet Autonomous Region.
Concert voor "Kashin-Beck Disease Fund"
Concert " De messias ", meesterwerk van Georg Friedrich Haendel,
Uitgelegd door het vocale ensemble " Terpsichore " en het orkest(band) van de Muses", begeleid door Xavier HAAG
Last January 2011, Professor Georges Lognay, responsible of the Department of Analytical Chemistry of Liege University (Faculty GxABT of ULg) (Belgium) came for 10 days in Lhasa. His objective was to give a training session for the team of the laboratory for endemic diseases (CDC). Several lab experts from the laboratory of the epidemic diseases join this training. People enjoyed very much to have an expert with them. They asked to renew this experience.
On January, 21st, 2011, the two partners: the Center for Disease Control and Prevention (CDC) of Tibet Autonomous Region and the Kashin-Beck Disease Fund (KBDF), through their 2 directors, respectively Dr. Sheerop Rapten and Dr. Françoise Mathieu, have signed a new agreement of collaboration for the coming 2 years. Several health authorities from CDC and Regional Health Bureau as well as representatives of the Foreign Affairs Bureau attended the ceremony
External evaluation of the programmes of Kashin-Beck Disease Fund
In December 2010, a committee of external experts made an evaluation of the programmes jointly implemented by the Center for Disease Control and Prevention and the Kashin-Beck Disease Fund. The evaluation included a field visit. The conclusions were positive and highlighted the benefit for the population, specially the children.
This evaluation was a necessary step for the eventual renewal of our agreement!
Last April 14th, 2010 a new earthquake has shacked a Western province of China: Qinghaï province. The magnitude was 7.1 on Richter scale. The Yushu County was one of the very badly affected areas.
On April 16, the reported number of deaths reached 791 and around 10,000 persons were heavily injured. Of course, a lot of houses collapsed and most of the people faced a lack of food and have no place where to sleep.
Our partner, the CDC of Tibet Autonomous Region, sent immediately a rescue team led by the Director.
Together with him, we decided to provide “tsampa” to 2 villages of Yushu county. The 2 administrative villages were Guoqing and Ganda villages. They included 22 natural villages populated with 700 households and 2447 people.
During 3 days, the KBDF team bought 7 tons of “tsampa” in Lhasa and on Sunday 25th, Mrs Yangzom from KBDF left for Yushu County with a big truck carrying all the tsampa. As soon as she reached the place after a trip of 3 days, the CDC team helped her and together they distributed during 2 days the tsampa directly to all the people.
Actually we are still monitoring the situation.
This “small” help was again possible thanks to your support. We would like to sincerely thank you to have made that possible.
KBD - Prevention & Treatment - 25th of May 2009
On May 25th, 2009 the KBD Foundation together with her partner: the Centre for Disease Control and Prevention of Tibet Autonomous Region (T.A.R.) held a conference in Lhasa. Several persons of the Regional Health Bureau and the Foreign Affairs Bureau of T.A.R were attending the meeting.
The objective of the conference was to present and to discuss the outcome of the 4 years project (including the research part).
The different topics were:
- New KBD prevalence map of T.A.R.
- Food consumption of children in KBD endemic rural areas of Central Tibet
- Rickets in young children living in a KBD endemic area in Central Tibet
- Effects of a combined micronutrient supplementation on Kashin-Beck disease in Tibet
- Mycology results: 2004 - 2007
- Future plan for prevention and treatment of KBD in T.A.R.
Op 6 Oktober 2008 trof een aardbeving met een kracht van 6.6 op de schaal van Richter het Zuid-Westen van de Autonome Regio van Tibet. Het epicentrum lag in het Damxung kanton dat zich ongeveer op 80 km van de hoofdstad Lhasa bevindt. De beving veroorzaakte ook schade in een deel van het Nyemo kanton, meerbepaald in de Shume vallei waar ons team reeds meer dan 15 jaar werkzaam is
Tien mensen overleefden de aardschok niet. Er waren 50 zwaargewonden die in openbare en militaire ziekenhuizen verzorgd werden.
Scholen en huizen waren ingestort of staan op instorten. Ongeveer 5000 mensen hebben de winter in tenten doorgebracht waarronder ook studenten die in een kostschool leven.
KBD Foundation hebben warme klederen en ondergoed aangekocht om de studenten van twee kostscholen te beschermen tegen de vrieskou.
Door uw financiële steun was deze actie mogelijk.
From Rotary Club of Shanghai- February 25, 2014 – Last Meeting’s Highlights - Speaker: Francoise Mathieu. Pagoda N°172– 25 Feb 2014 and Pagoda N°173 – 4 Mar 2014.
From Rotaract Club of Shanghai– February 24, 2014 - Speaker: Francoise Mathieu.
From Université de Liège - Gembloux Agro-Bio Tech. Newsletter : Septembre 20, 2013 - La maladie de Kashin-Beck au Tibet étudiée à Gembloux - by Coraline laurent
From La Meuse - Luxembourg: Septembre, 17, 2012 - Ils améliorent l'alimentation des Tibétains - by Nathalie Husquin
From Le Soir: February 16, 2011 - "Et si vous adoptiez un village tibétain ?" - By: Eric Burgraff
From OSIRIS news : December 2010 > February 2011 - L'HUDERF au Tibet - By: Marion Garteiser
From: the Royal Geographic Society of Hong Kong October 29, 2009 - "From Gaza to Tibet" - By: Françoise Mathieu
From CORRIERE DELLA SERA : June 21, 2009 - lt Resta un mistero la malattia che svuota i villaggi cinesi - By: Franca Porciani
From : 12 June 2009 - lt A Medical Mystery in Middle China - Vol. 324. no. 5933, pp. 1378 – 1381 - DOI: 10.1126/science.324_1378 - By : Richard Stone
From : Oct 21, 2008 - lt Rare disease haunts poor Tibet plateau villagers - By: Lucy Hornby
From: Le Petit Shanghaien, May 2008 - La maladie des gros os. Action humanitaire au Tibet - By: Sylvie Liu et Véronique Sohier
From: Infimag, le Magazine de l’Infirmière francophone (T: 082 21 33 50), Mars 2008 - Kashin-Beck Disease, Association, et Une infirmière au Tibet - By: Lili Dewitte
Belgian Newsletter – November 2007 – Novembre 2007 - Rencontre avec Françoise Mathieu Consulaat generaal van België te Shanghai - Consulat général de Belgique à Shanghaï
From : Shanghai Daily, June 25th, 2007 - Foundation fighting KBD in China - By: Lorna Chiu
From: McClatchy Newspaper, May 21st, 2007 - Mysteious illness haunts Tibetan highlands - By: Tim Johnson
From : Frankfurter Rundschau, April 28th, 2007 - Krankheit der armen - Sie sind kleinwüchsig, haben ständig Schmerzen – Zehntausende Tibeter leiden unter der rätselhaften „Großen Knochenkrankheit“. - By : Harald Maass
From: Les Editions de l'Avenir (Vers l'Avenir; l'Avenir du Luxembourg; Le Jour; le Courrier de l'Escaut; le Courrier), Thursday 2nd November, 2006 (N°255) - Humanitaires belges au Tibet. L’énigme de la maladie des gros os - By : René Smeets
Harbin Medical University (Heilongjiang province): news December 12th, 2005 - Project Director of Belgian Kashin-Beck Disease (Control) Foundation - visit the Center for Endemic Disease Control - By: Zhang Xufeng
From: Le Journal du Médecin, Tuesday 30th August, 2005 (N°1691) - Le Tibet, les gros os et les champignons - By: Dr. Claude BIEVA
From: Taipei Times, September 30th, 2003 - A "disease of poverty" strikes Tibet's villages
From: New York Times, September 29th, 2003 - Stunted by Illness, Tibetan Villagers Ponder Flight - By: Jim YARDLEY
From: Médecins Sans Frontières - International Activity Report 2002. China, Tibet - MSF-USA: 2002 Activity Report - China –
From: Médecins Sans Frontières - International Activity Report 2001. China, Tibet. - MSF-USA: 2001 Activity Report - China -
From: Food Research Institute FRI Newsletter Fall, September 4th 2001, Vol. 13, No. 3 - World literature: Kashin-Beck Disease: Mycotoxins and Selenium - By: Ellin DOYLE
From: British Medical Journal, February 20th, 1999 - Beijing conference reviews Kashin-Beck disease - By: Richard TOMLINSON