Join United Parent Projects Muscular Dystrophy (UPPMD) 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 UPPMD 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. With broad representation on a geographic and disease-specific basis, UPPMD can have greater influence on advocacy efforts that benefit patients with Duchenne (and Becker) Muscular Dystrophy.
- Advocacy UPPMD membership links the influence and relationships of UPPMD 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 UPPMD 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 UPPMD 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 UPPMD website.
- Opportunities to Connect UPPMD 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 UPPMD supports the research efforts of member organizations through sharing information related to sources of research funding. UPPMD will also play a crucial role in data collection beneficial to care and drug development.
- Member Organization Visibility UPPMD partners with its members to create greater awareness for them throughout all UPPMD 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 UPPMD annual meeting or ask to organize a meeting, webinar or conference call on specific subjects.
- Awareness Day Members are invited to participate in the organization of the annual World Duchenne Awareness Days, will receive materials such as template letters for advocacy and other materials to help them make this a success in their own country.
- New members Groups in countries where no organizations exist will receive help to set up their own organizations.
- Fundraising UPPMD is not sponsoring activities of their member groups, but will advise on national fundraising activities.
- Logo Members can use the UPPMD logo on their websites and printed materials to show they are part of a global network.