WDAD receives high patronage of the European Parliament

World Duchenne Awareness Day 2019 will be celebrated under the High Patronage of the European Parliament

It is estimated that today in the EU, 5-8000 distinct rare diseases affect 6-8% of the population – between 27 and 36 million people.

 

The EU’s strategic objective for rare diseases is to improve patient access to diagnosis, information and care. It assists in pooling scarce resources spread across the EU, enabling patients and professionals to share expertise and information. Specific measures include:

As an international Duchenne Communitywe are very grateful to the European Parliament for this important recognition and the effort in fighting rare diseases.

How you can bring your light to Duchenne families

With World Duchenne Awareness Day approaching, there are so many ways you can get involved in raising awareness on this rare muscle condition. No matter what effort you make, your contribution to raising awareness will help lift off Duchenne Muscular Dystrophy from this world. Here are some tips on how you can bring your light for World Duchenne Awareness Day.

  1. Talk. Use this day to bring up topics or questions you have to open up conversation with family, friends or anyone about Duchenne. This can involve this year’s topic ‘Nutrition & Nutriceuticals in DMD’, but can cover anything that is on your mind. 
  2. Listen. Some Duchenne parents or families don’t want to hear solutions, they just want to be understood. Allow yourself to become a listener and focus on creating mutual understanding to set the path towards meaningful problem solving. 
  3. Learn. Attend a conference, event or fundraiser nearby and support your local Duchenne organisation. This not only brings you fresh knowledge and insights, but also creates a stronger bond with other Duchenne families. 
  4. Donate. Reach out to your patient organisation and ask how you can help. Donate your time, expertise or money and help create a better quality of life for those affected by Duchenne Muscular Dystrophy.
  5. Show. Demonstrate your solidarity with the Duchenne community by taking a picture with a red balloon, and post it on social media with the hashtag #WDAD2019, mentioning @duchenneday.

With these steps in mind, we can build together on a future with better standards of care and quality of life by those affected by Duchenne Muscular Dystrophy. On September 7, let’s hear it for Duchenne and Becker boys, men, girls, carriers, and anyone who is affected by this muscle condition.

World Duchenne Awareness Day 2017 in Mexico

7 tips for effective event communication

“If a tree falls in a forest and no one is around to hear it, does it make a sound?”. A large contributor of organising a successful awareness raising effort is great communication. The quality of any relationship (with families, patient organisations, clinicians, institutions and companies) comes down to the quality of good communication. Learning how to communicate effectively goes a long way in creating personal connection and thus, a greater impact of your fundraiser, event or campaign. Here are seven tips to effective awareness communication, regardless of the type of effort. 

1. ORGANISE, ORGANISE, ORGANISE

Good project management can make your effort so much less tiring. Create an online document containing a list of participants, programme, list of timings, speakers, and sort out venue & logistics in advance. Assign responsibilities to people who you can build upon. ALWAYS have a backup plan for key pieces of your effort, for example an important speaker or if your event is outside.

2. Ask for testimonials

People don’t just want to hear you talk, they are also interested in hearing other people’s stories. Use the dictaphone function on your mobile or another digital voice recorder to gather experiences, thoughts and insights from participants. If you want to post them on social media, make sure you have consent to use it for those purposes. You can make a list of questions to ask that you can rotate during your interview rounds. 

3. Get social

In the days before your event, start making noise in the social arena. Create an event on Facebook, set up a hashtag to collect all things related to your event in one place, and tag or mention influential figures: this may be persons, organisations or institutions. If you organise a conference, you can think of broadcasting or livestreaming the event on Facebook. 

4. Engage the press 

Journalists are a powerful source to engage and broaden your impact, especially towards the civil society that are not related to Duchenne Muscular Dystrophy. However, they are short on time. Disseminate a press release that contains all the information they need to create an article. A press release contains a strong title, key insights, background, a summary, contact details and high resolution pictures. 

5. ensure follow-up

After your event ended, do not stop here. By creating momentum during your event, you can spark engagement with participants and stakeholders to keep going. Are there certain actions that derive from your event? Is a working group starting, or new collaboration efforts? Did new insights and stories emerge from your gathering? This can serve as a basis for new publications. 

6. Build a strong team

Create message groups to align your team and ensure everyone is aware of their role. Ask around for volunteers that can take care of tasks like registration, taking pictures, engaging on social media and creating fun activities for children to attend. Don’t be afraid to delegate tasks. Remember the proverb: “If you want to go fast, go alone. If you want to go far, go together.”

7. MAKE IT VISUAL

In the hectic days in advance and during your event, documenting it visually and in text might not be on the top of your list. However, images and notes create the fundamentals of your communication. Hire a photographer, or ask someone to take high quality pictures in landscape on their mobile phones, and collect them in a central cloud storage place like Dropbox or Drive. 

Organising an event can be a very stressful job with too many things going on at the same moment, but effective communication with your team and participants can ensure a smooth job. Once you see the gains of good communication and the benefits it brings for your community, your time spent on communication will be more effective and meaningful.

How to light up a monument in your city

Everyone can bring their light for the World Duchenne Awareness Day, even a monument! In the past years, many important monuments all over the world have been illuminated for Duchenne. Sometimes, it was the red color only, and sometimes the organization included the logo and distinctive red balloon.

Do you also want to lighten up a monument or landmark for this year’s World Duchenne Awareness Day? This article provides you with guidelines on how to make this happen.

5 steps to follow:

  1. If you are interested in lighten up a monument in your city, check on the website of your city the procedures ( office that is in charge of this activity, documents needed, timing ).
  2. As soon as you have the details from your city, contact our team and you will receive all the documents and high resolution logos needed.
  3. Create a local communication plan to speak about this important action and our team will help you for the international communication.
  4. Launch your event, enjoy the light and take pictures for your memories and communication!
  5. Post your pictures on your website and social media platforms with the mention @duchenneday or #WDAD2019 to share your experience with the Duchenne community.
In 2017, the Colosseum in Rome, Italy became the center piece of World Duchenne Awareness Day in Italy due to enlightening the century-old monument with the logo.

5 steps you can take to raise awareness

share the video + press release

Share the BRING YOUR LIGHT FOR WORLD DUCHENNE AWARENESS DAY video on social media, television, hospital screens, and many other places, and use the press release to make journalists aware of information they didn’t know. 

get involved in social media

Communication is essential to raise awareness on Duchenne! Share the promo video, put the red balloon as profile pictures on your social media, tell us in which way you “bring your light” for Duchenne. 

Bring your light by donating 

Support the activities of the World Duchenne Organization: we can really make the difference together! Use the red balloon, symbol of the World Duchenne Awareness Day.

promote education & set up a meeting

Share the educational materials available on our website, organize an educational meeting or attend a local initiative!

organise an event 

Light up a monument to celebrate the World Duchenne Awareness Day, organize an event involving as many people as possible to turn the community bigger and stronger.

Duchenne Family Guide

Thanks to the collaboration of four not-for-profit organizations – the Muscular Dystrophy AssociationParent Project Muscular DystrophyTreat-NMD and the World Duchenne Organization – a thoroughly updated and re-drafted Duchenne Guide for Families is developed. This guide gives parents, families and caregivers access to the information necessary and enables them to work with their health care and support provides in ensuring optimal care.

Click here to access the Family Guide in USA English and UK English. Translations are available via the TREAT-NMD website.

In line with the three articles about care considerations for DMD recently published in Lancet Neurology1-3, a new Duchenne Family Guide has been developed and were published on World Duchenne Awareness Day, 2018.

The development of the updated care considerations was funded by the U.S. Center for Disease Control. These updates offer the latest clinical considerations to improve care, services, and quality of life for people living with Duchenne, raise the standards of care for Duchenne and will assist clinicians in making the best possible recommendations for these patients.

References:

  1. Lancet Neurol. 2018 Mar;17(3):251-267. doi: 10.1016/S1474-4422(18)30024-3
  2. Lancet Neurol. 2018 Apr;17(4):347-361. doi: 10.1016/S1474-4422(18)30025-5
  3. Lancet Neurol. 2018 May;17(5):445-455. doi: 10.1016/S1474-4422(18)30026-7