Plan of action 2015-2016 European Waldenström Macroglobulinemia network (EWMnetwork)

EWMnetwork, in acting as an umbrella organization for WM patient groups in Europe, aims to give WM patients a voice within relevant European political and healthcare organizations, focusing on

- access to treatment and medication
- access to information on and patient involvement in clinical trials
- research into new treatments
- facilitating the (in)formation of WM patient support groups

To be effective as a European patient organization representing a very rare disease we look for
partnerships and collaborationswith

1. relevant European and international patient- and hematological organizations

2. Waldenström- or Lymphoma patient organizationsin European countries.

Ad 1.partnerships and collaborations with relevant European and international patient- and hematological organizations

1.1.EWMnetwork is an active member or partner of the following patient organizations:

EURORDIS(European Organization for Rare Diseases)

EWMnetwork is one of the around 500 members of Eurordis and one of the nearly 50 members of EURORDIS-CEF (CEF = the Council of European (patient) Federations), which offers training and opportunities of collaboration to patient organizations that want to playan active role. Since 2010 members of the board of EWMnetwork participate in Eurordis activities.

In 2015 one of the EWMn board members attended the Eurordis Summer School offering an annual workshop for patient advocates whose aim is to further understanding among patient representatives of their role and potential input into the regulatory processes of e. g. drug development and clinical trials in Europe.

Action: continuation of active participation in Eurordis activities.

RareConnect

RareConnect is a joint project of EURORDIS and NORD (National Organization for Rare Disorders – USA) that facilitates online patient communities for those affected by arare disease. At present there are around 80 different RD communities. Each online community, of which the WM community is one, has a discussion forum and the means of posting articles, information and stories. RareConnect operates in five European languages.Since the start of the WM online community in 2011 one of the EWMn board members is moderator for the Waldenström group.
Action: continuation of active participation.

Lymphoma Coalition (LC)

LC is a global network of worldwide not-for-profit lymphoma patient organizations. One of the EWMn board members attended in 2014 and 2015 the meetings for European lymphoma patient organizations, that were held preceding the annual meeting of the European Hematology Association (EHA). Aim is to establish (new) contacts withWM and/orlymphoma patient groups in Europe.
Action: continuation of participation in LCEurope by attending the annual meeting (in combination with the EHA meeting).

IWMF(International Waldenstrom’s Macroglobulinemia Foundation)

The IWMF, established in the USA, is the largest WM patient support organization in the world, having at present around 6500 members worldwide. Since 2009 EWMnetwork has much contact with IWMF and contributed in some IWMF activities in Europe. In 2016 the IWWM-9 (9th International WM workshop for medical specialists) will be held in Amsterdam, October 6-9 and IWMF plans a Patient-Doctors Day related to this.EWMnetwork proposes to organize hersecond MAB (Medical Advisory Board)-affiliate meeting at that time.
Action: continuation of the close contacts between the two organizations;attunement of the patient activities in Amsterdam 2016 with IWMF and the Dutch patient organization Hematon.

1.2 EWMnetwork is an active partner of the following hematological organizations:

ECWM (European Consortium for WM )

The European Consortium for WM has a membership of health professionals, with the aim of combining the expertise of clinicians, pathologists and researchers across Europe in order to develop novel strategies for diagnosis, assessment and treatment of patients with WM. In 2014 members of ECWM (many of them also being members of the Medical Advisory Boardof EWMnetwork) showed interest in closer contacts. In 2015 we try to define what EWMnetwork, as representative of European WM patient organizations, can offer to ECWM.
Action: preparation of a EWMnetwork - ECWMmeeting in 2015/ 2016.

EHA (European Hematology Association)

The EHA facilitates patient advocacy at the yearly congress by offering two patient advocacy sessions in the congress program and a booth for contacts with patient organizations. The two sessions are prepared by a group of representatives from different patient organizations.One of the board members took part in these sessions in 2014 and 2015.
In preparation of the patient advocacy sessions at the EHA Congress 2016 in Copenhagen,two workgroups will work on guiding patient advocates and patient organizations on “how to advocate for access” and “how to become involved in research” (where to start, whom to ask for help etc.).
Action: EWMnetwork participates with one or two board members in these workgroups.

Ad 2:partnerships and collaborations with Waldenström- or Lymphoma patient organizations within European countries.

2.1 information about WM on national WM or lymphoma websites

In order to enable WM patients to obtain information and support in their own country and language, EWMnetwork seeks the formation of WM patient support groups in all European countries and information about WM on national websites. In some countries national WM organizations have their own websites, in other countries WM information is given at national lymphoma websites, in many countries no WM information can be found on national websites.

Action:contacts with EWMn affiliates representing a WM patient group in their country and
contacts with those countries where no WM information on a national website is available.

2.2 web page for WM patient groups in each European country ()

To promote contact and interaction between WM patients and/or carers a web page in their own language is available for each country in Europe at .

The country pages can also be reached via the site.

Information of relevance to a particular country can be posted on its page.

In the case of a country where there is currently no patient support organization, it is possible for an individual to be named as the volunteer contact point for the exchange of information, with the intention that this will eventually lead to the creation of a network of support within a country and the ultimate formation of an active patient support organization.

Action: find contacts in the countries without WM patient groups, discuss the effect of the webpage in relation to other facilities as Facebook etc.

Ad 3: websites and Newsletters

Sofar EWMnetwork’s ways for public communication arewebsites and Newsletters (in 2015 one in July).

Action:organize more input for news on website and in Newsletters and discuss whether other ways of communication (Facebook etc) should be tried.

EWMnetwork

August 2015