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If you are an existing national group of Duchenne Parents it is important to become a member of WDO. WDO will help you find mentors who can help improving things in your own country, but also important for the Duchenne boys and men.

The more countries are connected, the more members we have, the stronger our voice can be. With broad representation on a geographic and disease-specific basis, WDO can have greater influence on advocacy efforts that benefit patients with Duchenne (and Becker) Muscular Dystrophy.

The World Duchenne Organization is a worldwide collaboration between Duchenne Parent organizations dedicated to improve treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy (DMD and BMD).

The organization will in particular devote itself to the realization of this task by way of the following goals:

  1. Promote research activities;
  2. Provide information to parents and clinicians on ongoing research, drug development, standards of care, patient advocacy; WDO reaches out to countries where limited information about Duchenne Muscular Dystrophy is available, and facilitates the exchange of information about fundraising and lobbying activities among member organizations.

We need to ensure that wherever they are in the world, children suffering from this disease can benefit from a standard of care that is informed by the best practice of the best clinicians from all over the world.

It is equally important that the information available to parents is contemporary, truthful and is based upon the latest research.

This helps your organization to become a ‘visible member’ of a large, collective voice on behalf of patients with rare diseases and more specific Duchenne (and Becker) Muscular Dystrophy.

As a member of the WDO membership community, we ask you to join the conversation and bring the power of more voices together to achieve mutual goals on behalf of patients and families affected by Duchenne Muscular Dystrophy.

  • Advocacy WDO membership links the influence and relationships of WDO leadership with the knowledge, expertise and patient connections of member organizations to represent and help achieve mutual goals for the DMD (and BMD) community.
  • Policy Development WDO represents the interests of its member organizations and all patients with DMD through its support of legislative and regulatory policies that improve patient access to care and promote innovation of new therapies.
  • Critical Issues Information WDO provides members with information about regulatory activity and public policy regarding drug development in the EU, US and elsewhere that will impact the rare disease community and, more specifically, the DMD and BMD community.
  • Education Member organizations have access to webinars, meetings with regulators and industry, receive information about ongoing educational webinars, and will have online access to scientific information through a digital library on the WDO website.
  • Opportunities to Connect WDO has a members only online community, and this gives the member organizations the opportunity to connect and gain access to the knowledge base within the membership community and to learn and share best practices on issues of similar concern. These can be related to public policy, or to developing their organization, building capacity and meeting the needs of the patients they represent.
  • Research Support WDO supports the research efforts of member organizations through sharing information related to sources of research funding. WDO will also play a crucial role in data collection beneficial to care and drug development.
  • Member Organization Visibility WDO partners with its members to create greater awareness for them throughout all WDO communications materials and the website, through listing of member activities and events, and attendance at select medical meetings.
  • Meetings Members are invited to attend annual meetings, free of charge, or more frequent if needed, are eligible to provide agenda items for this WDO annual meeting or ask to organize a meeting, webinar or conference call on specific subjects.

Objectives of members
Member organizations should have or develop a program for Duchenne and/or Becker Muscular Dystrophy (DMD/BMD). The organization would have to positively promote research, optimal care, knowledge, and education.

Leadership
Ideally a parent or affected person should chair the project. Where this is not possible, for want of someone to fulfil the role, a parent or affected person should have a significant strategic leadership role.

Business form
The organization should have a not-for-profit legal constitution with a management committee that is accountable to its membership.

Statement of activities
Each participating organization will produce an annual statement of its activities with the relevant financial information.

Members per country
If there is already an organization with membership in a country, other organizations are encouraged to become a WDO member as well. The more countries are connected, and the more members we have, the stronger our voice can be.

Membership fee
For organizations with an annual income less than € 100.000, the annual WDO membership fee is 1% of their annual income of the previous year. For organizations with an income equal to or above € 100.000, the membership fee is € 1000. Organizations will need to submit their annual financial statements every year before July 1st (of the next year).

Membership termination
Membership can be terminated by unanimous decision of the executive committee, if a member fails to uphold the above mentioned criteria and the reputation of WDO.

If you are interested in becoming a member, and you fulfill the membership criteria, please fill out the membership application form and return it to [email protected]

Patient Organizations, unite!

Become a WDO member