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WFH working on the ground to support Ukrainian refugees

The WFH continues to look at the situation in Ukraine with sadness and growing heartbreak. We know that families are suffering because of the war, and we feel compelled to act to help them.

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Over the last several weeks, we have been in constant communication with our national member organizations (NMOs) in Ukraine and in neighboring countries, and with our partners on the ground to understand the impact of the current conflict and to offer our support to refugees and patients with bleeding disorders who are in need. Ensuring that these people can leave Ukraine safely and get access to care and treatment in a destination country is our top priority.

Right now, the WFH is collaborating with hemophilia treatment centres (HTCs) in Poland—the primary arrival point for refugees leaving Ukraine—to make sure they have factor and other medical supplies to support the influx of refugees. We are also exploring the option of providing funding and support to the Rhine-Ruhr Coagulation Centre—our distribution facility in Germany—to help families settle in that country. The centre is currently distributing aid to refugees, helping them with housing and food and other integration assistance, including teaching them basic German. They have even hired a Russian-speaking support employee to help communicate with incoming refugees.

In a heartwarming development, many Syrians from the 2015 European migrant crisis who were supported by the centre are now providing Ukrainian refugees with food and clothing, and even helping them learn German. This gesture of appreciation—when so much suffering is taking place in Europe—is truly inspiring.

Click here to watch a news reel showing the inspirational work being done at the Rhine-Ruhr Coagulation Centre.

WFH relief efforts are being coordinated with local and international partners, including the European Haemophilia Consortium (EHC). Several of our corporate partners have already committed to additional shipments of product to meet the needs of the growing refugee population, and we are prepared to address any additional gaps through our existing WFH Humanitarian Aid Program resources.

The WFH recognizes that the repercussions of this conflict will be felt throughout the region for many months to come, and that the needs of our community will evolve. We will continue to support and work with our NMOs, partners on the ground and extended networks to ensure we are doing what we can to offer relief and support to all those in need during this crisis.  Our hearts go out to all those who are being impacted by the war in Ukraine.

If you want to contribute to WFH efforts to support patient organizations and HTCs in Ukraine and in neighbouring countries that are offering aid to refugees displaced by the conflict, please visit the WFH “Give” page and enter “Ukraine” in the “Comment” field, or contact Jennifer Laliberté, Director of Strategic and Community Partnerships, at [email protected].

We’ve accomplished a lot this year, we need your help to continue strong.

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Functional Scales

The outcomes of interest collected by the WBDR include demographic characteristics, clinical and treatment-related outcomes, burden of disease outcomes, and patient-reported outcomes.

The WBDR includes five functional scales as part of its extended data set:

WBDR hemophilia data sets

WBDR Minimal Data Set

The WBDR Minimal Data Set (MDS) is a set of data on demographics, diagnosis, symptoms and treatment which are collected on patients participating in the WBDR.

WBDR Extended Data Set

The WBDR Extended Data Set (EDS) is a larger set of data, with more details than the MDS, which includes questions on patient demographics, diagnosis, symptoms, treatment and burden of disease. The EDS can be used by hemophilia treatment centers to collect data on patients participating in the WBDR. The WBDR Extended Data Set (EDS), was added to the database in March 2019.