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Page 1: Founded in 1996. - EURORDISdownload2.eurordis.org/presentations/emm2012/F1_Vlasta... · 2018. 3. 28. · Founded in 1996. Two main goals Get together families Organize team of specialists

Page 2: Founded in 1996. - EURORDISdownload2.eurordis.org/presentations/emm2012/F1_Vlasta... · 2018. 3. 28. · Founded in 1996. Two main goals Get together families Organize team of specialists

Founded in 1996.

Two main goals

Get together families

Organize team of specialists

4 emploise

Budget 80.000€

Debra centre

Page 3: Founded in 1996. - EURORDISdownload2.eurordis.org/presentations/emm2012/F1_Vlasta... · 2018. 3. 28. · Founded in 1996. Two main goals Get together families Organize team of specialists

Problem / Presentation

Page 4: Founded in 1996. - EURORDISdownload2.eurordis.org/presentations/emm2012/F1_Vlasta... · 2018. 3. 28. · Founded in 1996. Two main goals Get together families Organize team of specialists

Page 5: Founded in 1996. - EURORDISdownload2.eurordis.org/presentations/emm2012/F1_Vlasta... · 2018. 3. 28. · Founded in 1996. Two main goals Get together families Organize team of specialists

Page 6: Founded in 1996. - EURORDISdownload2.eurordis.org/presentations/emm2012/F1_Vlasta... · 2018. 3. 28. · Founded in 1996. Two main goals Get together families Organize team of specialists

First steps

Family, frends, cousins

Media

Campaigns

Brending

Status

Page 7: Founded in 1996. - EURORDISdownload2.eurordis.org/presentations/emm2012/F1_Vlasta... · 2018. 3. 28. · Founded in 1996. Two main goals Get together families Organize team of specialists

Examples

TV spot with charity phone number

Page 8: Founded in 1996. - EURORDISdownload2.eurordis.org/presentations/emm2012/F1_Vlasta... · 2018. 3. 28. · Founded in 1996. Two main goals Get together families Organize team of specialists

Concert

Page 9: Founded in 1996. - EURORDISdownload2.eurordis.org/presentations/emm2012/F1_Vlasta... · 2018. 3. 28. · Founded in 1996. Two main goals Get together families Organize team of specialists

Page 10: Founded in 1996. - EURORDISdownload2.eurordis.org/presentations/emm2012/F1_Vlasta... · 2018. 3. 28. · Founded in 1996. Two main goals Get together families Organize team of specialists

Compaignes

Page 11: Founded in 1996. - EURORDISdownload2.eurordis.org/presentations/emm2012/F1_Vlasta... · 2018. 3. 28. · Founded in 1996. Two main goals Get together families Organize team of specialists

Page 12: Founded in 1996. - EURORDISdownload2.eurordis.org/presentations/emm2012/F1_Vlasta... · 2018. 3. 28. · Founded in 1996. Two main goals Get together families Organize team of specialists

Page 13: Founded in 1996. - EURORDISdownload2.eurordis.org/presentations/emm2012/F1_Vlasta... · 2018. 3. 28. · Founded in 1996. Two main goals Get together families Organize team of specialists

Page 14: Founded in 1996. - EURORDISdownload2.eurordis.org/presentations/emm2012/F1_Vlasta... · 2018. 3. 28. · Founded in 1996. Two main goals Get together families Organize team of specialists

Web auction celebrities donation

Page 15: Founded in 1996. - EURORDISdownload2.eurordis.org/presentations/emm2012/F1_Vlasta... · 2018. 3. 28. · Founded in 1996. Two main goals Get together families Organize team of specialists

Page 16: Founded in 1996. - EURORDISdownload2.eurordis.org/presentations/emm2012/F1_Vlasta... · 2018. 3. 28. · Founded in 1996. Two main goals Get together families Organize team of specialists

Survey

Founded 11994 PAULSON

Patient organisation direct access to Biobanksdownload2.eurordis.org/presentations/emm2012/WS5_Dr_Crimi.pdf · Patient organisation direct access to Biobanks Marco Crimi, Ph.D. Research

Founded by Brendan

5 EuropEAn ConfErEnCE on rArE - EURORDISdownload2.eurordis.org/documents/pdf/ecrd/2010/cahier5.pdf · A ACKNOW he rol T P T D r This con T BOUT LEDGEME organisers e: HE JAGELLIO EUROPEAN

Founded in 1754

Well Founded Ness

The compassionate use of medicinal products.download2.eurordis.org/presentations/emm2012/WS6_C...Agence nationale de sécurité du médicament et des produits de santé 4 Compassionate

FINANCIAL REPORT 2010 - EURORDISdownload2.eurordis.org/documents/pdf/financial-report-2010.pdf · 2010 Amsterdam, May 2011 Rare Diseases Europe . Title: Microsoft Word - 2010 Comments

New England Colony Rhode Island Founded in 1636 Founded by Roger Williams

Founded 1982 MMMMOOOONNNNIIITTTTOOOORRRR

Clinical Trials Charter - EURORDISdownload2.eurordis.org/documents/pdf/5_Clinical trials CharterFF.pdf · Clinical Trials Charter François Faurisson Clinical Research Advisor, Eurordis

Almanac of Records and Resultsathletics.possumbility.com/almanac/Almanac-1978_scan.pdf · Refol'ftd 1928) (Founded 1932) (founded 1929 • Disbanded 19~O Reformed 1948) I Founded

Using Social Media For - EURORDISdownload2.eurordis.org/presentations/.../WS1_S._Donnelly_BeeForBa… · Using Social Media For RAREdisease RareConnect Social Media Workshop Brussels

Compassionate use programmes - EURORDISdownload.eurordis.org/presentations/emm2012/WS6_Houyez_CUP_201… · Number of hits on www Number of ... 1000 10000 100000 USA France UK, NL,

Centre for Biomedical Network Research on Rare Diseases ...download2.eurordis.org/presentations/emm2012/WS1_M._Serrano_G… · health consumers who use the Web 2.0 tools in coping

The compassionate use of medicinal products.download.eurordis.org/presentations/emm2012/WS6_C_Bélorgey_ECR… · Agence nationale de sécurité du médicament et des produits de

How Colonies Are Founded Single-Queen-Founded Nests

Founded in 2006

Patient Involvement in EMA Activitiesdownload2.eurordis.org/presentations/emm2012/F501_Introduction_Lesley_Greene.pdfThe centralised procedure • The EMA is responsible for the scientific

HEAVY DUTY HYUNDAI...WARRANTY - 30 YEARS STANDARD PERFORMANCE WARRANTY - 25 YEARS FOUNDED 2001 FOUNDED 2003 FOUNDED 2006 Longi FOUNDED 2000 *This graph is current as at date of publishing

Dysmelia covers many - EURORDISdownload2.eurordis.org/presentations/emm2012/WS1_T... · Dysmelia covers many conditions Many people with limb difference are amputees, not congenital

EURORDISdownload2.eurordis.org/documents/pdf/eap.pdf · Astrocytoma)" that is sponsored by Novartis Oncology. In accordance with the "Eurordis Charter of Understanding for ... o Production

Propel founded by:

EURORDIS' activities on EU and National Policies Rare ...download2.eurordis.org/presentations/emm2012/F6_ JanGeissler.pdf · Co-founder, Leukemia Patient Advocates Foundation Chair,

Finnish Company Founded

FOUNDED 1862 T7BR

FOUNDED 1925 MANUFACTURERS

Danish Haemophilia Society - EURORDISdownload2.eurordis.org/.../F4-Lene_A...HAEMOPHILIA.pdfDanish Haemophilia Society •Health •The need and importance of physiotherapy, adequate

founded - NCCCO

Current initiatives on Rare Disease Patient Registers at ...download2.eurordis.org/presentations/emm2012/WS5_MEnsini_RegB… · progress in IRDiRC-funded research and will facilitate

Well Founded Relation

SPAIN EuroplanFinal Report - EURORDISdownload2.eurordis.org/rdpolicy/National Plans/Spain/4.EUROPLAN_… · FINAL REPORT I. General Information Country SPAIN Date and Place of the