An Open Letter to the Kidney Cancer Community

Bad Nauheim/Germany the 8th of March 2010

Dear Patients, Caregivers, Patient Group Leaders, Medical Experts and Industry Sponsors

The purpose of this “Open Letter” is provide more information about our new international network of
kidney cancer patient groups and provide some important background information about participation
and industry funding of this initiative.

What are the objectives of IKCC?
IKCC stands for “International Kidney Cancer Coalition”. IKCC will be an international network of
independent Kidney Cancer Patient Support Groups from around the world. The organization was born
from a strong desire among various national patient groups to network, cooperate and share
experiences.

We would like to emphasize very clearly: IKCC is not a coalition against any existing organization, nor
does it intend to replace any existing organization or duplicate the great work of any other organization.
Rather, IKCC will meet the unmet needs expressed by patient groups to network, share resources, and
promote best practices in patient support and patient advocacy from around the world. We welcome
every organization that has an interest in kidney cancer and will continue to extend an open invitation to
all groups to become a part of this international network. We also welcome individuals who are
interested in starting kidney cancer support groups in their own countries.

Why an International Coalition?
Global experience with other rare cancers proves that this type of an international network can be very
valuable, supportive and inspiring. A lot of associations, especially in Rare Cancers have limited
resources. So it makes absolute sense to share information, to cooperate and to work on similar
projects. Examples of successful international coalitions include:

• International Lymphoma Coalition – a worldwide network of lymphoma groups
• International Brain Tumour Alliance – an international brain tumour advocacy group
• Myeloma Euronet – European network of 42 groups from 20 countries
• Sarcoma Patients EuroNet Assoc. – European coalition of 17 groups from 13 countries

We all live in a globalized world - research and business is global. Most pharmaceutical companies are
global players, research and clinical trials in Kidney Cancer are globalized and experts are working on
international panels.

The preliminary mission of IKCC is: "Networking, collaborating and advocating on a global level to
better support patients at each national level.” We believe that together we will be able to speak as
one voice to expert panels and the industry on behalf of many Kidney Cancer Patient Support Groups.

How will IKCC be funded?

The IKCC funding policy is based on the well known Code of Practice Between Patients’ Organisations
and The Healthcare Industry from ECPC (The European Cancer Patient Coalition.) ECPC is a well
established organization comprising over 300 national and European umbrella cancer patient
organizations acting on this “Code of Practice”. IKCC is already acting on this Code of Practice and,
after registration as a legal entity, IKCC will be a member of ECPC. In the meantime, each organization
involved in IKCC is governed by the rules of transparency and ethical relations within their own
countries.

The idea of building the future association IKCC was not initiated or pushed by the industry. The idea
was voluntarily developed by several patient group leaders in 2009, who are strongly interested in
working closer together. From the very beginning we made our position clear that IKCC would only work
on a multi-sponsored, equal sponsorship basis.

Our First Conference – May 14-16, 2010
The main objectives of the conference in Frankfurt is to learn more from each patient organization and
to evaluate the future objectives and role of IKCC.
All the work for the conference has been done on a voluntary basis beside our daily work for our
national organizations. To cover the costs for such a global conference, we asked different
pharmaceutical companies to support this international project with unrestricted educational grants. We
are pleased to have their support. When the final agreements are made, we will be absolutely happy to
announce these companies and to be fully transparent to the global kidney cancer patient community.

At the end of our letter we would like to make this absolutely clear:
The members/people of IKCC are friendly-minded and positive people with a central and common
focus: Every day we see patients dying from Kidney Cancer. We would like to do our very best to
achieve the best support, care and treatment for kidney cancer patients and their families.
We hope that this letter helps to bring more transparency to our activities.
On behalf of the IKCC Steering Committee –

Steering Committee:
Dr. Marion Beier (DE) Tony Clark (CDN)
Vandana Gupta (IND) Deborah Maskens (CDN)
Andrew Wilson (UK) Rose Woodward (UK)
Markus Wartenberg (DE)
with best regards

Dr. Marion Beier
Markus Wartenberg

Kidney Cancer Germany

Association: IKCC Registration pending.
Phone: +49-6032-9492-439
ikcc@lebenshauspost.org