Umbrella Organization of European Waldenström patient supportgroups and patients

European
WALDENSTRÖM'S
MACROGLOBULINEMIA
network

Newsletter, Juli 2016


NEWSLETTER, July 2016
Germany and Sweden recently joined EWMnetwork as new affiliates
The German Lymphoma and Leukemia Patient organization LHRM, represented by Anita Waldmann, joined as affiliate. On their website www.LHRM.de information  in German can be found about WM treatment and about regular meetings for WM patients. For contact use the email address buero@LHRM.de.
A recently started closed Facebook group for Sweden, Norway and Denmark, also joined as affiliate, represented by Lars Hjelmström, lars@nixi.com.
A list of all affiliated 14 countries  you can find at http://www.ewmnetwork.eu/about/affiliated-members.
We hope to meet you October 8th and 9th 2016 in Amsterdam!
As EWMnetwork Affiliates and IWMF members know already: connected to the 9th International Workshop (5-9 October 2016) for Waldenström’s Macroglobulinemia (IWWM-9) in Amsterdam the following events for patients will be held:
EWMnetwork’s Affiliates meeting will be held on Saturday October 8th 2016, Amsterdam About place, time and program is yet to be decided. Anyway the meeting will be held somewhere near Amsterdam Central Station, roughly between 15.30-18.30 hours (including an informal part after the meeting).  EWMnetwork Affiliates have already been invited .
If you should like to attend the Affiliates meeting, please contact secretary@ewmnetwork.eu, if possible before July 29th, otherwise as soon as possible.
For logistic reasons, we must know in advance how many people approximately will attend!
The International Doctor-Patient Forum will be held October 9th 2016, Amsterdam
Many of you will have received this information already via IWMF. The meeting will be conducted in English and is open to all WM patients and their caregivers. Refreshments and lunch will be served and there is no fee to attend the meeting. REGISTRATION is mandatory, so please register at http://book.pattersonkent.com/iwwm9-international-doctor-patient-forum  early to ensure that a place is reserved for you. Last minute registration will also be available at the door from 8:00am to 9:30am pending availability.
For more information on the Forum  and program see http://www.iwmf.com/news-and-events/news/plan-attend-2016-international-doctor-patient-forum-wm

Lymphoma Coalition/Europe (LC/E) meeting and
European Hematological Association (EHA) congress, Copenhagen

a short review by Marlies Oom.
Lymphoma Coalition/Europe (LC/E) meeting June 8th 2016:
about 25 representatives of European Lymphoma patient organizations attending.

The following topics were, among others, presented and discussed:
-  World Lymphoma Awareness Day 2016;
-  The creation of a national case study: with UK Lymphoma Association Policy paper as an   example
-  Collaboration between Patient Organizations, Regulators and HTA bodies in the Evaluation of Medicines
-  Patient involvement in the Design of Clinical Trials.
All together these were good examples of successful patient involvement to learn from.

Next a workshop was held to learn how to use the LC resources available to LC members (Global database, Subtype resources, Resource Library, Subtype reports, etc.) to develop lymphoma subtype analyses at country level.
Important were the personal contacts during this day. To meet representatives of many lymphoma patient organizations in Europe, is a chance to ask them whether and if so, how information and support  for Waldenström patients is organized in their country.
This results always in new contacts and initiatives in some countries .
European Hematology Association (EHA) congress June 9-12th :
around 12.000 medical professionals and around 45 patient organizations attending.

The main Patient Advocacy Session at the EHA (prepared for doctors by patient organizations) was dedicated to Collaboration in networks to improve treatment and care: European Reference Networks (ERNs) in Hematology and the role of patient involvement.

Other interesting sessions, with a role for patient involvement, were (among others): Innovations in hematology: Cost and Benefit; Patents and licenses on biomarkers: a blessing or a burden?; EU projects – Innovative Medicines Initiative (IMI2).
Looking back at the meetings in Copenhagen :
-  as one of the 12 members of the EHA  Patient Advocacy Group, as member of LC/E, EURORDIS/(CEF) and other European Cancer patient Networks, EWMnetwork  is by now known to quite a lot of relevant fellow patient organizations;
-  representing a very rare disease and being a very small organization, EWMnetwork can only together with these patient organizations fruitfully contribute to improving patient involvement in all stages of healthcare.

 

This year EWMnetwork was invited by EHA to share with six other patient advocacy organizations a booth for promotion and for meeting interested EHA members, congress attendants and fellow  patient advocacy organizations (see picture above).
 
What is EUPATI
EUPATI is a European consortium driven by patient organizations to educate patients to better understand the whole process of drug development and registration.
The aim is through better education get more people involved in drug development.
More info on the consortium http://www.patientsacademy.eu .
The EUPATI Toolbox
For your information use the link of the EUPATI Toolbox for patient education https://www.eupati.eu/ in English, also available in French, German, Italian, Polish, Spanish and Russian.
The EUPATI toolbox is an interesting website with a lot of information for patient advocates and for all patients who want to learn more about topics like for instance Basics of Medicine, Clinical development and Trials, Personalized Medicine.
 
Marlies Oom, secretary EWMnetwork
Rosmalen, July 12th 2016

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