Today MPN Advocates Network, a global collective of patient advocate organizations that serve people living with Myeloproliferative Neoplasms announces the retirement from the Steering Committee of two of their esteemed members.
Peter Loffelhardt is one of the founding visionaries of the MPN Advocates Network. Like many advocates, he is a patient himself, having been diagnosed with Polycythaemia Vera in 1994. It’s hard to imagine now, but 25 years ago, reliable information about MPNs was very difficult to find, specialists were rare and newly-diagnosed patients had to cope with very little support. Peter believed that people in that situation deserved more, and set about establishing a support group for patients in his adopted home of Spain. As his work as a patient advocate progressed, he used the skills he had developed over a long and successful career in international business to build a broad network of contacts in the medical community and the pharmaceutical industry.
Peter soon realised that advocates and patient communities in other countries faced the same challenges as he knew existed where he lived and he started to make connections with clinicians and advocates around Europe. The genesis of MPN Advocates Network dates from early 2013 when Peter asked a small group of like-minded patients, advocates, and doctors to meet with him in a small meeting room near Heathrow airport in London. One of his attributes is an outstanding ability to build relationships with people, whatever their nationality or background; those at the meeting were immediately drawn to Peter’s vision for international collaboration between patient groups and MPNAN was born.
Peter has been at the heart of our network since that day and has been instrumental in driving it to become the global organisation that it now is. Quite simply, MPNAN would never have existed were it not for Peter and we wish him every success as he continues to build patient organisations in Spain and his native Switzerland.
Also retiring is Robi Zelig. When he was diagnosed with Myelofibrosis in 2013, Robi found that there was very little support available for MF or other MPN patients in Israel and decided to do something about it. Working with Giora Sharf, who had already established a CML patient group, the Flute of Light organisation was created which now supports Israeli patients with a range of blood cancers.
Robi realised that MPNs do not recognise national borders and, when the opportunity arose in 2015 to help MPN Advocates grow, he became a member of the international Steering Committee, dedicated to sharing best practices learned from his work in Israel and helping to establish patient groups around the world.
Robi has become a popular figure at annual Horizons conferences and has made many friends in the MPN world. Robi has brought a wealth of expertise and experience to MPN Advocates Network, as well as his passion and commitment to supporting MPN patients. We wish him every success in continuing to support the MPN community.
MPNAN has recently announced a call for nominations for the Steering Committee. Please click here to read more.