Association / Forum« Vivre sans Thyroïde »

����Life without thyroid gland����

The association

• Created in 2007 to administer et finance the forum. Administered by patients, all volunteers.

• Board of medical advisors

• Annual assembly « online »

• Low annual fee (from 5€ upwards)

• Recognized « of public interest »• Recognized « of public interest »

• Member of the French « rare disease alliance », of the association for the quality of health websites AQIS

• International cooperation : Thyroid Federation International; ThyroidCancer Alliance

• Regional and national meetings and conferences

• Many different projects to continue and enlarge the objectives of the forum, and to better defend the interests of thyroid patients.

President :Beate Bartès, ToulouseTranslatorFounder of the websiteThyroid cancer in 2000presidente@forum-thyroide.net

Treasurer :Bernard Cartozo, Marignane

Vice-president :Marion Lagneau, ParisGastro-EnterologistThyroidectomy (Graves) 2000,hypoparathyroidismvice-presidente@forum-thyroide.net

Secretary :

Directory board

Bernard Cartozo, MarignaneThyroid cancer (2006)tresorier@forum-thyroide.net

Christine Monseu, Poitiers

Graves, thyroidectomy

crichine@forum-thyroide.net

Secretary :Véronique Barot, VincennesThyroid cancer (2008)secretaire@forum-thyroide.net

Plus a group of « active members » and moderators, all volunteers.

Medical advisory board

Dr Pascal BardetEndocrinologist – Paris

Pr Françoise Borson-ChazotEndocrinologist – Lyon

Dr Michel GersonEndocrinologist – Colmar

Prof Patrice RodienEndocrinologist - Angers

Prof Martin SchlumbergerNuclear medecin - IGR Villejuif

Dr DavidTaïebNuclear medecin – MarseilleEndocrinologist – Colmar

Dr Dana HartlSurgeon - Institut Gustave Roussy - Villejuif

Dr Hortensia MircescuEndocrinologist - Montréal

Dr Hervé MonpeyssenEndocrino-echographist, Versailles

Nuclear medecin – Marseille

Dr Jean-Marc ThilloisSurgeon - Paris

Dr Jean TramalloniRadiologist - Neuilly

Prof Jean-Louis WemeauEndocrinologist – Lille

Thyroid Association Website

The website (forum) :

• Created in October 2000

• Open to all, totally free of charge

• 10.900 registered users (Jan. 2011)

• More than 4000 connections per day

Approx. 110 messages per day• Approx. 110 messages per day

• Certification HON (Health on the Net)

• 14 chapters : General questions, Graves, Hashimoto, Cancer, Surgery, Medication, Pregnancy, Children …

• FAQ (Frequently Asked Questions), link list …

• Under construction: a web portal

Aims

•Exchange of experience between patients withthe same problems/diseases, emotional support, mutual encouragement : « virtual community »

•Library (guidelines, brochures, articles …)

•Explanation and « translation » of medical terms

•Link between doctors and patients•Link between doctors and patients

•Better knowledge of thyroid disease

•Standardisation of treatment: guidelines etc.

•Defence of patients interests (problems with healthinsurance, credit, conflicts at work ...)

• Information and emotional support via the forum, on Facebook and Twitter, on Youtube (educational videos), by email & by phone

Present website : www.forum-thyroide.net

Map (various countries) to find other patients in the same area ...

Origin of visitors : France, Canada, Belgium, Switzerland,Germany, Marocco, Luxemburg, Algeria, Russia, Austria, Netherlands, Israel, Ukraine, Poland, Graeat-Britain, Italy, Greece, Spain, Monaco, Latvia, Romania, Polynesia, Irland, Madagascar, Portugal, Brazil, Turkey, New Zealand, New Caledonia, Ivory Coast, Hungary, Wallis & Futuna, Australia, Slovakia, Denmark, Vietnam, Mexico, China, Lebanon, Japan, Syria, Singapore, Moldavia, Indonesia, Czeck Republic, Norway, Argentina, India, Dom. Rep., Finland, Gabon, Sweden, USA, Malaysia, Réunion, Andorra, Serbia, Thailand, Tchad, South Africa, Croatia, Jordania, Colombia, Saudi Arabia, St Maurice, Egypt, Island, Cypros, Bielarus, Mozambic, Senegal, Chili, Bahrain, Bosnia Herzegovina, Samoa, Estonia, Burkina Faso, Uruguay, Paraguay, Pakistan, Tuvalu, Taiwan, Costa Rica, Ecuador, United Emirates, Belize, Armenia, Congo, Hong Kong, Guatemala, Ghana, Bulgaria, El Salvador, Philippines, Lithuania, Georgia, Cocos Islands, Slovenia

User groups:

per country or region

• French departments/regions

• Belgium

per disease

• Graves

• Hashimoto

• Lobectomy• Switzerland

• Maghreb

• Quebec

• Outre-Mer ...

• Hypoparathyroidism

• congenital hypo

• Papillary / follicullary / medullary cancer

• Clinical trials …

Under construction : new web portal

Regional antennas

Paris : support group created in spring 2010.

Monthly patient meeting « Café thyroïde », on the 2nd Tuesday of each month

Other local support groups : Normandy, Brittany, Quebec

International cooperation

Thyroid Federation International• International umbrella organisation, founded 1995 in Toronto, by six

organisations.

• Members : Patient associations and patient-oriented associations from all over the world, with various features: thyroid disease in general, thyroid cancer, Graves disease, Graves orbitopathy ...

• At present, 20 member organisations:

Australian Thyroid FoundationBelgium/Holland: Zonder Schildklier LevenBrazil: Instituto da TiroideCanada : Thyroid Foundation of CanadaDenmark: Tyroidea LandsforeningenGermany: Schilddrüsenliga, Ohne Schilddrüse LebenFinland : KilpirauhasliittoFrance : Vivre sans ThyroïdeGeorgia: Georgian Union of Diabetes and Endocrine Association (GUDEAS)

Great Britain : TED (Thyroid EyeDisease Charitable Trust)Italy: AIBAT, Atta-Lazia-OnlusJapan, Dr Fumito AkasuMexico: Asociación Mexicana de TiroidesNetherlands: SchildklierstichtingNorway: Norsk Thyreoidea ForbundRussia: Thyroid Found. St PetersburgSweden: Svenska SköldkörtelföreningenUSA : National Graves DiseaseFoundation

• At present, 20 member organisations:

Aims:

• Exchange of experience between members

• Cooperation between doctors and patient organisations

• Improve the knowledge of the general public about thyroid disease

• Assist the creation of new organisations

• Provide information about thyroid disease in various languages• Provide information about thyroid disease in various languages

Activities:

• Yearly AGM, at the location of the ETA congress

• Participation in the congress of the European Thyroid Association : Booth, attending lectures, organising a patient forum

• Since 2009: « International Thyroid Awareness Week » in cooperationwith Merck-Serono

• Newsletter « ThyroWorld »

• Website: www.thyroid-fed.org

www.thyroidweek.com

Website of the International ThyroidAwareness Week (since 2009)Awareness Week (since 2009)

7 languages (English, German, French,Spanish,Arabic,Portu-guese, Greek)

General information (articles, leaflets, videos) about the thyroidand thyroid disease, plus a yearlyspecial feature:-2010: Thyroid and pregnancy-2011: Nodules and cancer-2012: Thyroid and heart /Iodine Deficiency

TFI : Annual Meeting 2011, Krakow, Poland The 3 TFI presidents: Yvonne Andersson, 2003-2011, Ashok Bhaseen, 2011- …, Larry Wood, 1995-2003

ETA2011, Krakow, Poland ETA2011: Patient symposium with Prof Schlumberger

ETA2008, Thessaloniki, Grece International Thyroid Congress ITC2010, ParisETA2008, Thessaloniki, Grece International Thyroid Congress ITC2010, Paris

International Thyroid Congress ITC2010, Paris ITC2010 : meeting between TFI and the presidents of ETA, ATA, LATS und AOTA

Thyroid Cancer Alliance (TCA)

Created in 2009 as an informal, international coalition of all major, national self-help organizations of thyroid cancer patients, who joined together in a number of projects to bring the patient voice to the Thyroid Cancer medical community.

First meeting on 6th August 2009 in Toronto, on the occasion of the first World Congresson Thyroid Cancer. Second meeting on 10th September 2010 in Paris, on the occasion of the 14th International Thyroid Congress. of the 14th International Thyroid Congress.

First common project: the international Thyroid Cancer Patient Survey, which waspresented at the International Thyroid Congress on September 11, 2010.

Members of the workgroup (2009-2010):

Actira ArgentinaThyroid Cancer CanadaVivre sans Thyroide, FranceOhne Schilddrüse Leben, GermanyButterfly Thyroid Cancer Trust, UKLight of Life Foundation, USAThyCa, USANordisk Thyreoidea Samarbejde, Scandinavia

First meeting of the TCA, Toronto, August 2009Left to right: Joan Shey, Light of Life USA; Beate Bartès, Vivre sans Thyroïde, France; Sandra Licht, Actira Argentina; Gary Bloom, ThyCa USA; Yvonne Andersson, Nordisk Allianz/TFI; Harald Rimmele, Ohne SD Leben, Germany; Kate Farnell, Butterfly Thyroid Cancer Trust, UK

Patient representatives + Genzyme representatives

ITC2010, Paris: presentation of the TCA survey at the Genzyme symposium, to more than 700 thyroid specialists (Kate Farnell, Butterfly Thyroid Cancer Trust, UK)

Presentation of the TCA poster at the ITC2010 in Paris Full results: www.thyroid-cancer-alliance.org

Members :

- Actira Argentina- Thyroid Cancer Canada- Vivre sans Thyroide, France- Ohne Schilddrüse Leben, Germany

In 2011, creation of an official umbrella organization registered in Canada.

Germany- Butterfly Thyroid Cancer Trust, UK- British Thyroid Foundation, UK- Hypoparathyroidism (HPTH) UK- Association for Multiple EndocrineNeoplasia Disorders ( AMEND)

- Thyroid Cancer Support Group –Wales

- Light of Life Foundation, USA- Schildklierstichting Netherlands- Asociación Española de Cáncerde Tiroides, Spain

AGM Thyroid Cancer Alliance, New York, October 2011

Some picturesof the VST activities !of the VST activities !

Patient information events, conferences

Patient conference on thyroid cancer, Paris, March 2009March 2009

Running day against cancer, Paris 2009

Patient conference, Brussels 2008Patient meetings : Paris, Toulouse, Pignans, Bruxelles …

World Congress on Thyroid Cancer, Toronto 2009ITC2005, Buenos Aires

Patient conference with TFC, Montréal 2009 TFC 30th anniversary, Ottawa 2010

Endocrine cancer conference, IGR Rare Disease Alliance, « presidents’ workshop »

TFI General Assembly, Paris 2010 Congress SFE, Deauville 2010

Television

National & international « Thyroid Awareness Week »

Les effets pervers des déremboursements29/04/2010 | Dépenses de santé

Baisser le taux de remboursement de certains médicaments pourrait finalement coûter plus cher àl’Assurance maladie. C’est ce que démontre la présidente de l’association « Vivre sans thyroïde »,Béate Bartés.

Dans sa lettre, Béate Bartès dénonce le passage de 35% à 15% du taux de remboursement del’euthyral, le seul médicament combinant les hormones T4 et T3, pour les patients souffrant de lathyroïde. « Il n’existe aucun médicament qui permette de remplacer l’euthyral en gardant lesmêmes apports d’hormones », s’inquiète-t-elle.

Pour le remplacer, elle indique qu’il faudra combiner du lévothyrox (T4) avec du cynomel (T3). Ellecalcule que cela coûtera entre 7 et 8,20 €, remboursés à 65%, au lieu de 3,21 € pour l’euthyralseul, soit un surcoût pour l’assurance maladie. De plus, pour obtenir des dosages adaptés, ilfaudra couper le cynomel en 2 ou en 4, avec des risques d’intoxication élevés en cas d’erreur.

« De nombreux malades sont extrêmement inquiets depuis qu’ils ont appris cette baisse deremboursement pour un traitement qu’ils prennent à vie et qui est indispensable pour eux »,s’alarme Béate Bartès. Pour l’instant, elle n’a obtenu aucune réponse de la part de la HAS, del’UNCAM ou du ministère de la Santé.

10th anniversary, Paris, October 16th, 2010

Leaflets, poster, pins …

Newsletter(1 to 2/year)

Thank youfor your attention !for your attention !