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World Duchenne Organization

The World Duchenne Organization (WDO)[1] is the global umbrella organization of national advocacy organizations for Duchenne muscular dystrophy (DMD) and Becker muscular dystrophy (BMD), two rare diseases that are defined by progressive muscle loss. The WDO Articles of Association[2] states its main objective as “Worldwide collaboration between Duchenne Parent organizations in order to improve the treatment, quality of life and long-term outlook for all individuals affected by Duchenne and Becker muscular dystrophy (DMD and BMD).” The organization is based in The Netherlands. As of January 2022, WDO connects 49 organizations from 38 countries[3] worldwide.

WDO’s activities[4] includes advocating for finding a cure and viable treatments for DMD/BMD, promoting good standards of care, and to inform parents and patients around the globe. It informs all stakeholders, provides support and assistance to organizations, shares timely and truthful information in an understandable format, and enables FAIR data for Duchenne. The WDO Annual Member Meetings serve as a forum for defining the global strategy.

The WDO has played a leading role in several activities and achievements, most notably the World Duchenne Awareness Day[5], returning individual clinical trial data back to patients[6], and the Duchenne Patient Academy[7].

Its current priorities include implementing the latest care guidelines[8][9], the importance of nutrition and (the risk of) nutritional supplements[10], social inclusion[11] and disability rights, FAIR data, and the use and development of wearables and other digital outcomes[12].

History

Origin

The WDO was established on March 2, 2007, under the name of United Parent Projects Muscular Dystrophy (UPPMD)[13]. Its work began in 2008 after collecting sufficient financial resources. The first meeting of the Board, the organizations’ governing body, took place in that year. To reflect the global and inclusive character of the organization, in 2018 the name was changed to World Duchenne Organization (WDO)[14]. In 2021, the articles of association were officially updated.

Establishment

Its WDO Board, the organization’s decision-making body, consist of 6 board members that sets goals and priorities, and approves the budget and activities. The Chair is Elizabeth Vroom from the Netherlands[13].

The WDO relies on contributions from member organizations, projects, and private donors for funding. It is not sponsored by industry[13]. Its total financial income of 2019 is EUR 27,000, of which the majority comes from projects sponsored by the European Commission and Innovative Medicines Initiative (IMI), and contributions from member organizations. Contributions are calculated based on the organization’s annual income statement of the preceding year.

Partnerships

The WDO is an eligible member of the European Medicines Agency (EMA), Full Member of European Patients’ Forum, Full Member of EURORDIS, and Full Member of Rare Diseases International.

Activities

Duchenne Care

  • 2018: Healthcare professionals and patient advocates from all over the world are joining the discussion[15] around the implementation of the latest Standards of Care.
  • 2019: Webinars[16] and regularly updated news feed[17] on the COVID-19 pandemic with relevant information for Duchenne and Becker muscular dystrophy.
  • 2020: Creation of a series of DMD-Care Videos[18]: explanimations that explain specific aspects in Duchenne care, that are translated into several languages.
  • 2021: Duchenne Care Conference[19] with simultaneous translation in Spanish, Ukrainian, and Russian.
  • 2022: Duchenne Care Conference focusing on Adult Duchenne care and the latest Consensus Guideline for Adult Duchenne Care[20].

World Duchenne Awareness Day

  • 2014: Many faces of Duchenne[21]. Explain to the civil society what Duchenne muscular dystrophy is, what does it mean to live with this disease day by day.
  • 2015: Duchenne Stories[22]. By telling the dreams of the DMD boys worldwide it was possible to inform and involve the civil society to be part of this commitment for a better future.
  • 2016: Early Diagnosis[23]. Identifying and communicating early signs of Duchenne in order to guarantee a good quality of life to the children.
  • 2017: Duchenne Dreams[24]. Dreams can come true if they are followed by plans, by commitment by a life that is not limited by Duchenne muscular dystrophy.
  • 2018: Standards of Care[25]. Conferences to update clinicians and other healthcare professionals, the publication of the updated DMD Guide for Families, and the release of a series of educational videos, understandable for young people so they can become advocates of their own health.
  • 2019: Nutrition in Duchenne[26]. Raising awareness on the need to pay special attention to nutrition and the intake of fluids. In addition to this, the risks of nutritional supplements, especially in combination with other medication, is discussed.
  • 2020: Duchenne and the Brain[27]. Online education event to raise awareness on brain comorbidities such as autism, ADD and ADHD and learning difficulties in people affected by Duchenne and Becker muscular dystrophy.
  • 2021: Adult Life and Duchenne[28]. Life expectancy of individuals affected by Duchenne MD has increased significantly. Adult life with Duchenne comes with new challenges and opportunities, as well as with new medical issues. In addition of promoting the Consensus Guideline for Adult Duchenne Care[20], an educational live event was held.

FAIR Data for Duchenne

  • 2019: March 21 and 22, WDO organized a meeting in Amsterdam to discuss the FAIR initiative, the Personal Health Train, Duchenne Data Platform and next steps related to data visiting. The meeting was attended by representatives of registries, advocacy leaders, clinicians, scientists, companies and regulators. The Duchenne FAIR Declaration resulted from this meeting.
  • 2021: March 3, WDO organized a follow-up webinar to inform participants on our progress in making Duchenne resources FAIR, inspire by presenting successful FAIR implementation projects, and moderate an open discussion on how to overcome key challenges in data sharing[29].

Structure

Membership

As of January 2022, the WDO has 49 member organizations from 38 countries. An organization becomes a full member if it has an official not-for-profit status, should have or develop a program for DMD/BMD to positively promote research, optimal care, knowledge exchange and creation, and education. 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.

List of member organizations

Last updated: January 4, 2022

Argentina Asociación Distrofia Muscular (ADM Argentina)
Australia Duchenne Australia
Belgium Duchenne Parent Project Belgium
Bolivia Escuela Taller de Integración
Brazil Aliança Distrofia Brasil ADB
Brazil APDM São Paolo
Canada Jesse's Journey
Canada La Force DMD
Chile Duchenne Chile Foundation
Cyprus Cyprus Muscular Dystrophy Association (MDA CYPRUS)
Czech Republic End Duchenne
Parent Project Czech Republic
Finland DMD Finland
France AFM Téléthon
Greece MDA Hellas
India PPMD India
Ireland Duchenne Ireland
Israel Little Steps
Italy Duchenne Parent Project aps
Kenya Duchenne Muscular Dystrophy Foundation Kenya
Lebanon Land For Hope Lebanon
Lithuania Justas Charity Fund
Macedonia Muskulna Distrofija Asociacija Makedonija
Mexico ADMO A.C.
Enlace Distrofia Muscular Duchene Becker AC
Netherlands Duchenne Parent Project the Netherlands
Poland Parent Project Muscular Dystrophy Poland
Romania DMD Care Association
Parent Project Distrofie Musculara
Russia CF Gordey
Parent Project Duchenne Russia
Serbia DMD Srbija
Slovakia The Four Musketeers
Slovenia DMD Slovenija
South Africa MDSA South Africa
Spain Asociación Duchenne Parent Project España
Sri Lanka PPMD Sri Lanka
Sweden DBMD Sweden
Swedish Muscular Dystrophy Foundation (SMDF)
Switzerland Progena Swiss Duchenne Foundation
Turkey DMD AİLELERİ DERNEĞİ
DMD Turkey
Ukraine DMD Ukraine Mio Life
NGO Duchenne Ukraine
United Kingdom Action Duchenne
Duchenne Family Support Group
Duchenne UK
United States PPMD USA
The Akari Foundation

References

  1. ^ "Home • World Duchenne". World Duchenne. Retrieved 2022-01-04.
  2. ^ "Financial Report & Statutes • World Duchenne". World Duchenne. Retrieved 2022-01-04.
  3. ^ "Members • World Duchenne". World Duchenne. Retrieved 2022-01-04.
  4. ^ "Strategy • World Duchenne". World Duchenne. Retrieved 2022-01-04.
  5. ^ "What is Duchenne? • World Duchenne Awareness Day". World Duchenne Awareness Day. Retrieved 2022-01-04.
  6. ^ "Return of patient data". vision-dmd.info. Retrieved 2022-01-04.
  7. ^ "Apply now for Duchenne Patient Academy 2021". Duchenne Patient Academy. Retrieved 2022-01-04.
  8. ^ "Family Guide • World Duchenne". World Duchenne. Retrieved 2022-01-04.
  9. ^ "Duchenne Adult Care • World Duchenne". World Duchenne. Retrieved 2022-01-04.
  10. ^ "Nutrition in Duchenne • World Duchenne". World Duchenne. Retrieved 2022-01-04.
  11. ^ "About DMD/BMD". Social Duchenne. Retrieved 2022-01-04.
  12. ^ "Meeting on the use and development of wearables and other digital outcomes for Duchenne • World Duchenne". World Duchenne. Retrieved 2022-01-04.
  13. ^ a b c "Financial Report & Statutes • World Duchenne". World Duchenne. Retrieved 2022-01-04.
  14. ^ "UPPMD is rebranding! • World Duchenne". World Duchenne. Retrieved 2022-01-04.
  15. ^ "Duchenne Care Conference • World Duchenne". World Duchenne. Retrieved 2022-01-04.
  16. ^ COVID-19 and Duchenne & Becker muscular dystrophy (March 2020), retrieved 2022-01-04
  17. ^ "Live/ COVID-19: Coronavirus and Duchenne & Becker muscular dystrophy • World Duchenne". World Duchenne. Retrieved 2022-01-04.
  18. ^ "DMD-Care videos • World Duchenne". World Duchenne. Retrieved 2022-01-04.
  19. ^ "Duchenne Care Conference 2021 successfully concluded • World Duchenne". World Duchenne. Retrieved 2022-01-04.
  20. ^ a b "Duchenne Adult Care • World Duchenne". World Duchenne. Retrieved 2022-01-04.
  21. ^ "2014: Faces of Duchenne • World Duchenne Awareness Day". World Duchenne Awareness Day. 2019-05-16. Retrieved 2022-01-04.
  22. ^ "2015: Duchenne Stories • World Duchenne Awareness Day". World Duchenne Awareness Day. 2019-05-16. Retrieved 2022-01-04.
  23. ^ "2016: Early Diagnosis • World Duchenne Awareness Day". World Duchenne Awareness Day. 2019-05-16. Retrieved 2022-01-04.
  24. ^ "2017: Duchenne Dreams • World Duchenne Awareness Day". World Duchenne Awareness Day. 2019-05-16. Retrieved 2022-01-04.
  25. ^ "2018: Standards of Care • World Duchenne Awareness Day". World Duchenne Awareness Day. 2019-05-16. Retrieved 2022-01-04.
  26. ^ "2019: Nutrition in DMD • World Duchenne Awareness Day". World Duchenne Awareness Day. 2019-09-05. Retrieved 2022-01-04.
  27. ^ "2020: Duchenne and the Brain • World Duchenne Awareness Day". World Duchenne Awareness Day. 2020-06-06. Retrieved 2022-01-04.
  28. ^ "2021: Adult Life & Duchenne • World Duchenne Awareness Day". World Duchenne Awareness Day. 2021-05-07. Retrieved 2022-01-04.
  29. ^ "Highlights on Data sharing for Duchenne meeting • World Duchenne". World Duchenne. Retrieved 2022-01-04.

Category:Rare diseases Category:Muscular dystrophy organizations

Category:Health Category:Disability

Category:Patients' organizations Category:Patient advocacy

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