joining the ikcc network: international advocacy for kidney cancer patients – through ikcc…...
TRANSCRIPT
Joining the IKCC Network:International Advocacy
For Kidney Cancer Patients –
Through IKCC…
Friday 17th April 2015 Anne Wilson – Australia
Markus Wartenberg – Germany
Joint Chairs: Deb Maskens (CDN), Rachel Giles (NL)
Governance: Anne Wilson (AUS), Michael Herbst (RSA)
KC Medicals: Rachel Giles (NL) - Research
Berit Eberhardt (DE) - State of the Art Treatment & Care
Support/Mentoring: Rose Woodward (GB), Michael Herbst (RSA)
(Incl. Health Policy and HTA)
Communications: Joyce Graff (USA)
Management Services to IKCC-LT
Advisor to the LT: Markus Wartenberg (DE)
Admin. Coordinator to the LT: Julia Black (GB)
Mid of 2013: New Leadership Team (LT)
The global collaboration of
national patient groups supporting those
affected by kidney cancer:
To empower one another
To raise awareness of kidney cancer
To speak with a common voice
in research and treatment and care.
The MISSION of IKCC…
Empowering organisations
to improve the lives of those
affected by kidney cancer worldwide.
The VISION of IKCC…
A comprehensive global network of
kidney cancer patient groups –
a peer-to-peer partner with
a strong common and influential voice.
The long-term POSITIONING of IKCC…
The VALUES of IKCC…
Patientcentered &democratic
Professional
Collaborativebut independent
TransparentEthical
Culturallysensitive
(respectful)
Innovative
Joining forces fortreatment quality, innovations and changes…
Healthcare
Industry
(nat. / intl.)
Patients,
Patient-Groups:
Intl. Networks
Physicians,
Medical Profess.
(Medical Networks)
Communicationand Cooperation
Patients Needs and ExperiencesClinical Practice: Access to - and Quality of Treatment & Care
Clinical Research/Clinical TrialsBiology, Molecular Genetics, Pathology
Reasons for such a “Coalition”…
SharingInformation Know how,
Best Practice
DevelopingCommon
Positions…
RaisingAwareness
of KC
Havingone Global
Voice…
Passion forChange &
International
Networking
Joining Forces to overcome
Unmet Medic.,
Needs in KC
IKCCNetwor
k
Legal Entity: Foundation, registered in The Netherlands under:
Stichting Intl. Kidney Cancer Coalition, Reg.-No. KvK 62070665
Registered:Stichting IKCC - 't Ven 30 - 1115HB Duivendrecht - The Netherlands
Board Members: R. Giles (NL) (Chair) * D. Maskens (CDN) (Vice-Chair)
B. Eberhardt (D) * J. Graff (USA) * M. Herbst (ZA) *
A. Wilson (AUS) * R. Woodward (GB)
Services: Administrative Coordinator: Julia Black
Advice / Mgmt. Services / Financial Operations: Markus Wartenberg
Available - Deed of Incorporation (Dutch/English)
Documents: - Code of Conduct
- Annual Conference Reports
- Patient Charter for Global Kidney Cancer Care
9th Dec. 2015: The IKCC Foundation
Overview: Activities, services, projects – with “direct 2015 budget implications”…
2015-ConferenceEXPANDING CIRCLESMorristown, NJ, USA
01
Task Force/Consensus Roundtable
on “Papillary KC”06
IKCC-LeadershipGlobal LT- & Working-Meetings (incl. TC's)
02
Presence atMedical Conferences & Networking Initiatives
03
INTERNAL: Office, Half-Time-Prof. Admin.-/Orga.-Costs, Advise/Mgmt.-Services (00)
Book ofCourage and Hope
(Global Patient Stories)05
Annual Report 2015(incl.
Conference Report)04
• Four IKCC Conferences were successfully organised in 2010 in Frankfurt – in 2012 in Rome - in 2013 in Windsor/London and in 2014 in Amsterdam. This will be the first IKCC-Conference outside Europe…
• The 5th IKCC Annual Conference will be held from 16th to 18th of April 2015 in Morristown, New Jersey, USA and aims to provide KC patient advocates with an opportunity to share experience and best practice, as well as to learn about advances and challenges in the treatment of rare cancers.
• The three day conference will focus on research, treatment and advocacy/capacity building.
• Leading Global KC Experts will join to present the latest news and answer questions.
• Participants will attend from 20 countries covering Patient Advocates, Medical Experts and Representatives of the Healthcare Industry…
2015-Conference EXPANDING CIRCLES
Global Meeting-/Working-Budget
for the LT or members of the LT/AC
Face to Face LT-/AC-Meetings –linked to the IKCC Conference 2015 in Morristown
Face to Face Meetings with Industry Partners – mainly in New Jersey – late summer 2015
Face to Face LT-Meeting (Annual Working & Strategy Meeting)early July 2015 (near Paris)
Face to Face Meetings of LT-Members to cooperate,exchange an move activities/projects further on
Teleconferences on a regular basis with the LTand in different working-/project groups
Global LT- & Working-Meetings (incl. TC's)
Participating in important Conferences and Networking Initiatives
(…if no grants/scholarships are available…)
Important Oncology-, Urology-, Kidney Cancer Meetings/Conferences
Cancer Patient Advocacy Meetings/Conferences
Initiatives where IKCC is involved
Travelling Expenses to meet different Stakeholders e.g.KC Medical Experts, Medical Societies, Sustaining Partners (Industry)
Occasions to generate information or initiate collaborations
Training/Education for LT-Members
Presence at Medical Conferences & Networking Initiatives
Conference/Meeting Calendar 2015 (Excerpt):
26. – 28. Feb. ASCO-GU Orlando, Florida
20. – 24. MarchEAU Congress Madrid, Spain
16. – 18. April IKCC-Conference 2015 Morristown, NJ, USA
24. + 25. April KCA European Symposium Lyon, France
16. – 21. May AUA Annual Meeting New Orleans, USA
29. May – 02. June ASCO Annual Meeting Chicago, USA
14. – 17. June HTAi Conference Oslo, Norway
03. – 05. July IKCC Board Meeting Chantilly, France
09. – 12. July SmartStart Training Frankfurt, Germany
25. – 29. Sept. ECCO/ESMO Vienna, Austria
09. – 10. Oct. EORTC/SPAEN Training Course Brussels, Belgium
Late Oct. KCA Chicago Meeting Chicago, USA
Presence at Medical Conferences & Networking Initiatives
NEW in 2015: IKCC Activity Report
Target Audience: = Pharmas, Medical Experts, Researchers,Regulators, Payers, Patient Adv. Groups, Patients with English Skills
Contains our Projects, Activities, Engagement
Overview Global KC Community (Image Tool)
Will also include “Conference Report” fromour Annual Conference 2015 in Morristown
Available as PDF and a limited number of printed copies
Release: Summer 2015
Activity Report 2014/2015 (incl. Conference Report)
• IKCC is recognized as an international disease-specific“Cancer Patient Advocacy Network”
• We started to build up relationships with many networks,societies and other “Cancer Patient Advocacy Networks”
• Initiative to be involved in the next EAU KC-Guidelines
• RCE – Rare Cancers Europe – Multi-Stakeholder Initiative
• SmartStart Training Course – March 20 to 22, 2015 in Frankfurt(funded by Bayer Global Advocacy)
• EORTC Training Course “Understanding Clinical Research in Cancer” –October 9 to 10, 2015 in Brussels
• Etc.
Projects, where IKCCis already involved as a partner/member…
Affiliate Organisation Criteria/Application Voting Right
Associated Individual By Invitation/Application Voting Right
(Healthcare Professionals)
Supporter Application No Voting Right
Joining the IKCC…
Joining as an Affiliate Organisation
Our organization has a focus on providing services and/or supporting patients with kidney cancer and raising awareness, promoting research, or empowering organisations that are focused on supporting those affected by kidney cancer.
Is recognized and/or registered as a non-profit organization. Is willing to abide by the IKCC’s Code of Conduct in addition to
adhering to the strict ethical guidelines for charities and non-profits according to their own national contexts
Is willing to work with and co-operate with other organisations having the same objectives
Affiliate organisations have VOTING RIGHTS
Joining as an Associated Individual
By invitation (complete the application if you would like to be invited.)
Physicians and healthcare professionals I am a clinician or allied healthcare professional and wish to
express my interest in becoming an Associated Individual. VOTING RIGHTS
Joining IKCC as a Supporter
Organisations not yet meeting the full criteria of an Affiliate Organisation
or individuals with an interest in kidney cancer patient support and advocacy may join IKCC as a Supporter.
Supporters do not have voting rights in matters pertaining to the IKCC.