Live Feed: Emergency situation in Ukraine for Duchenne and Becker MD families
The World Duchenne Organization is close to families affected by Duchenne and Becker MD in Ukraine. We urge Ukrainian families to contact us. Please send any information, updates and requests to [email protected].
Donate for DMD/BMD families affected by the Ukraine conflict
- WDO receives an official letter with photos from Duchenne Ukraine confirming that the humanitarian goods have been successfully distributed to families in various parts of Ukraine.
- The documentary ‘Help Has No Borders‘ is launched that portrays Duchenne families affected by a direct emergency, including the Russia-Ukraine war.
- The humanitarian goods are being picked up in two rounds from a location in the Netherlands. They are delivered to a local distribution center in Ukraine.
- Following the ordering of essential materials, the goods are being gathered in a warehouse, and arrangements have been made for the first pickup.
- Efforts are underway to order the necessary materials, and documents are being prepared for customs clearance.
- The DMD Emergency Program remains committed to providing financial support to patient organizations that are helping Duchenne families impacted by the ongoing conflict in Ukraine.
- Based on the results of the mapping needs exercise, a detailed plan has been drafted to facilitate the ordering, logistics, and distribution of these goods to ensure that the needs of affected families are met effectively.
- The DMD Emergency Program continues to offer financial assistance to patient organizations that aid Duchenne families affected by the ongoing conflict in Ukraine.
- WDO, in collaboration with Duchenne Ukraine, is engaged in a mapping exercise to identify the essential equipment needs of Duchenne families. This effort covers a range of critical areas, including medical equipment and basic household necessities.
- The DMD Emergency Program is extending its financial support to patient organizations assisting Duchenne families affected by the ongoing war in Ukraine. Alongside Ukrainian patient organizations, the program is also offering aid to foundations and hospitals in neighboring countries that are aiding refugees from the conflict.
- Foundation 29 has developed a web app called Relief Ukraine for mobile. This application connects rare disease patients from Ukraine with medical needs with organizations distributing medical and pharmaceutical aid. The patient or physician in Ukraine registers and fill their medical needs, especially the drugs needed, and location (not compulsory). Then, WDO receives the information on a Dashboard and activate and tries to help.
- WDO published stretching and exercise videos for Duchenne in Ukrainian. The videos are originally created by Lindsey Pallant, Neuromuscular Physiotherapist at the Regional Neuromuscular Team Leeds General Infirmary and PTC Therapeutics in collaboration with Duchenne UK. We are grateful for them to allowing us to share the content and make it available in Ukrainian.
- A trailer of a documentary titled ‘Help has no borders’ on the emergency in Ukraine is launched. We started this storytelling path in Poland, at the borders, where many refuges arrive. We interviewed families, clinicians, patients representatives, volunteers.
- WDO visited the borders in Poland (Medyka) where the refugees arrive. We are interviewing refugees, patient organizations and volunteers to hear their stories and share their experiences.
- Nicoletta Madia coordinator of the DMD Emergency Program, travels to meet and work with our organizations and families in the Czech Republic and Poland. Daily news will be shared on our official pages.
- We are currently supporting three important paths: 1) Food and medicines to the community in Ukraine. This has been done two days after the beginning of the conflict. 2) Money to DMD/BMD families still in Ukraine to survive: this action is coordinated with the local organization. 3) Money to DMD/BMD refugees: this action is coordinated with the DMD organizations working in the different countries and welcoming the Ukrainian families.
- In addition to donations by PayPal, a Facebook Fundraiser is collecting money for families affected by the Ukrainian conflict. Within two days, over 50% of the target goal of EUR 20.000 is already achieved.
- The World Duchenne Organization has activated the DMD Emergency program for the victims of the Ukrainian conflict by cooperating internationally with humanitarian aid.
- World Duchenne Organization is preparing products to be sent to the Ukrainian people. We are participating in the global solidarity action to stay close to all the people who are suffering now because of the war. We believe that helping each other is the only way to make the difference. And change the world.
- The Russia-Ukraine war has started. World Duchenne Organization issues a state of emergency for Duchenne families in Ukraine and is working with local patient organization to organize support.