Welcome, Fundación Bekämpa, Ecuador!

map 300420We hereby proudly welcome a new member organisation in the CML Advocates Network:

Fundación Bekämpa based in Ecuador.

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In Memoriam of Jacek Gugulski

Jacek Gugulski

It is with regret and sadness to hear of our recent loss of our dear friend Jacek Gugulski, who passed away on the 6th of February at the age of 52 years after long time of struggling with cancer. A service is being held on Thursday, February 11th at 13:00 in Chęcinach, St. Bartholomew Church.

Jacek was the long-time President and Co-founder of our member in Poland, the Polish Nationwide Association of CML Patients and the Polish Cancer Patient Coalition.

He was a friendly and charismatic person, a very respected patient advocate. In his activities for the benefit of haematological patients, he showed great empathy and commitment. He initiated many meetings and actions promoting cancer treatment for patients throughout Poland. He engaged heavily to ensure that haematological patients in Poland had access to effective drugs and therapies.

In our Co-founder Jan Geissler words, "I have known Jacek since 2004. He was diagnosed with CML in 1991. He co-founded "Stowarzyszenie PBS" in 2004 and from that moment was very active to advocate on behalf of cancer patients on the national and international level. 

In 2004, he was at our European Cancer Patient Coalition Summit of Cancer Patients Advocacy Groups in Central and Eastern Europe held in Warsaw under the hospices of the Polish First Lady Jolanta Kwaśniewska.

In 2005, the year we decided to set up the CML Advocates Network, a number of CML patient organisations did one of their first joint advocacy activities by sending letters from all parts of the world to appeal to the Polish government to reconsider their position on putting Glivec on the list of reimbursed medicines in Poland, which, thanks to Jacek, was successful. 

He attended many European Cancer Patient Coalition meetings, as the Masterclass in 2009, and a countless number of CML Horizons conferences over the past decade. We will miss Jacek a lot!"

On behalf of the global CML patient advocacy community, we extend our heartfelt sympathy to his wife Monica, and his two sons Bartek and Cuba and also to the whole family and friends. We wish them peace to bring comfort and courage to face the difficult days ahead.


Rest in peace, dear Jacek.

 

 

Our CMLCAB Abstract published in the OJRD Supplement

CAB Poster ECRD

 

Orphanet Journal of Rare Diseases (OJRD), which is the official journal of Orphanet, the portal for rare diseases and orphan drugs, has recently published a special supplement featuring over 50 selected poster and speaker presentation abstracts from the 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020).

This journal, published by BioMed Central, is an open access online journal focused on rare diseases and orphan products and publishes high-quality reviews on specific topics.

Our Abstract "CML Advocates Network implementation of the Community Advisory Board (CAB) model" has been included as part of this collection as P28 (page 17).

See the OJRD Supplement: 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020). Orphanet J Rare Dis 15, 310 (2020). https://doi.org/10.1186/s13023-020-01550-1

 

Download the PDF by clicking on the image below:

ECRD PDF

 

 

In Memoriam of Stanislav Kulikov

stan web

It is with great sadness that we share that our friend, colleague, and CML patient advocate Stanislav Petrovich Kulikov passed away on 18th December 2020, due to a sudden illness.

CML Advocates Network loses a friend who was also a very active patient advocate, leading the Sodeystvie (Assistance) patient’s organisation as Vice-President in the Volga Federal District and always strongly supporting the network’s initiatives and projects. 

Stanislav was a very special, helpful person and a passionate advocate. In words of our colleague Irina from the Patient Foundation "Drop of Blood” in Ukraine, “Stan was the best friend to patients from Ukraine. He was the best fighter for the rights of patients in Russia, broughting good and light to people living with blood cancer in the region. We will always miss him. Thank you, Stan, for all the warmth and kindness.”

He never rested from advocating for leukemia patients and trying to improve diagnosis, access, and quality of life for CML patients in Russia and its neighboring countries. He participated in over ten CML Horizons International Conferences, actively collaborating in many different activities of the global network as the World CML Day or the TFR for CML patient’s research. 

“All of us will remember Stan as the happiest friend, who restlessly dedicated his time to improve the quality of our lives and make this world a little bit better with humility and kindness”, Dražen Vincek from Croatia stated.

We owe Stanislav a lot, not only for all that he has done for the CML Advocates Network and for Russian patients but also for being a dear friend and a great advocate. We will miss him very much, and we wish his family and all friends all the strength and wisdom they need in these difficult times. Rest in peace, dear Stanislav.

- The CML Advocates Network Steering Committee on behalf of the CML advocates global community -

 

Welcome, FUNDALMC from Venezuela!

map 300420We hereby proudly welcome a new member organisation in the CML Advocates Network:

 

FUNDALMC - Fundación para la Asistencia al Paciente con Leucemia Mieloide Crónica based in Venezuela.

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Welcome, ARCRare from Romania and HEMA from Macedonia!

map 300420We hereby proudly welcome two new member organisations in the CML Advocates Network:

Asociația Română de Cancere Rare/ Romanian Rare Cancers Association based in Romania and

HEMA-Association for support of patients and caregivers of Hematology diseases based in Macedonia.

The CML Advocates Network now counts a total of 125 member organisations in 93 countries worldwide! See the list of CML groups in the Network on our world map.

 

 

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