The new technologies are showing us that our world has a much faster evolution compared to the evolution of human being. It is today for any human being very difficult to distinguish between true and fake news. There is a lot of fake news in Internet which has been introduced at purpose with a commercial of personal background.

This also happens in the medical field. I am a patient of Polycythemia Vera, a rare blood decease, classified as a cáncer, and part of MPN diseases. The majority of the affected patients do not understand completely the explanations of the Hematologist and arriving at home, they try to find information in internet. The quantity of wrong information which they will find is tremendous. This happened to me over 20 years ago when i got diagnosed PV. As my father has been a Doctor and I have working for many years in the pharma Industry, I do have more knowledge in this field than the majority of people has, still I could not find the correct answer to my questions and problem.

I came to the conclusion that the patients do need professional help. Since quite some time, mostly in Europe, Canada and USA patient support groups, so called Advocacy Group, had been formed in order to help patients and I decided to be part of this support. I started a simple platform in Spain and shortly after, with the help of the Pharma Industry I founded an Association with the idea to give a global support to all the advocates group around the world. All together we are much stronger. Today we have 35 member and our goal is to reach 100 within the next two years.

The principal idea is to help patients in any form needed, information, psychological help, talks in groups and to give the confidence to battle the illness with optimism and courage, vital components in order to maintain a good quality of life and to control the illness.

We are also at the disposal of Hematologists and Oncologists in order, jointly, to improve the quality of life of the patients.

The majority of these Associations are formed by patients and volunteers and do not get paid for their work.

Last but not least, allow me please to use the opportunity to request any Hematologist who knows about a patient who need help or who like to build up a patient support group, to tell him that he contacts me by mail, pelo.globe@gmail.com

Thanks you in advance.

Kind regards
Peter Löffelhardt

Barcelona, March 2018

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An Introduction to MPN Advocates Network

MPN Advocates Network has been established to address the needs of MPN patients from a global perspective. Our goal is to build a worldwide network of MPN patient groups and to use that network to improve the lives of MPN patients everywhere. Our committee is comprised of MPN patients, MPN care partners and other individuals who have a vested interest in MPNs and their treatment.

While the MPN Advocates Network is responsible for its own work, it is part of the Leukaemia Patient Advocates Network organization, a non-profit legal entity registered in Switzerland.
The objective of the organisation is to enhance MPN patient care by collaboratively:
Acting as an international collective representative of MPN patient groups, interacting with healthcare providing, funding, treatment approval, and research organisations

Supporting the creation of MPN patient communities in countries and regions where such a need exists
Sharing best practice of support and advocacy activities between all patient groups
Sharing available information on all current treatments, technologies and research results
Encouraging cooperation between advocates, researchers, clinicians and healthcare organizations

MPNAN holds an annual conference for its members known as MPN Horizons, at which a combination of sessions on medical and advocacy sessions are presented.

Additionally, MPNAN is committed to conducting projects and initiatives that support its mission and goals.
MPN Advocates Network operates purely for the benefit of MPN patients and acts independently of any other organisation or company. MPN Advocates Network aims to be supported by a broad base of sponsorship and funding.

Our website is http://www.mpn-advocates.net and we can be contacted at mpnadvocatesnetwork@gmail.com
Sincerely,

Jon Mathias, Chairperson