🇺🇦. "Because many Ukrainians have family or friends already living in Poland, and because of language skills and a large, shared border, many Ukrainians are moving into Poland. Poland has been welcoming to Ukrainian refugees, and they have the same access to care as Poles and have been offered free train travel within Poland. However, patients with rare diseases need more support beyond other refugees, for example to find their specialty centres and access to specialised treatments: a role that patient organisations are mobilising to help with within Poland and other countries.
...expert centres need to anticipate and ideally facilitate the arrival of Ukrainian refugees.
There have been very impressive examples of grassroots efforts of patient groups supporting vulnerable patients to cross the border safely and access appropriate accommodation and care on the border. Organisations like Fundacja SMA,2 Debra International3 and EB Polska,4 and Edu5 and NoRo6 in Romania have mobilised effective networks to support dozens of families to safely cross into Poland, Romania, and elsewhere and to access care on the other side.
However, there are many vulnerable patients with rare diseases in Ukraine who would like to leave but are unable to because:
- They need specialised transport to accommodate their medical devices or disability;
- They cannot get 'fast tracked' across the border and their care needs mean they cannot wait in long lines overnight (there are reports of some border crossings having waits of 2–3 days); and
- Men aged 18–60 years are not allowed to leave the country. ...cases where a man is the carer of his spouse, ...There are also cases where a man is the sole carer of a child." #ukraine
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