We witness, with great sadness, the continuation of the invasion of Ukraine by Russia.
Soon after the first attack was launched, ELF released a statement together with the European Respiratory Society (ERS), to show that we stand in solidarity with those members of our communities impacted by the invasion of Ukraine by Russia.
We pledged our support to our affected members, partner organisations, people living with lung diseases, staff and friends in and from these countries. We called upon the European Union, the United Nations, WHO Europe and other UN agencies, humanitarian organisations and the international community at large to protect all victims of this conflict, particularly those living with or treating lung disease.
Now we would like to pledge some more concrete actions:
We would like to offer direct support and advice to people with lung diseases in Ukraine or those who have been displaced. If you need advice about your condition and do not have access to healthcare, please contact us at firstname.lastname@example.org.
We will try, using our relationship with expert members of ERS and the organisations who are part of the ELF Patient Organisation Network, to answer your questions or find help in the place that you are in. We would also like to hear in general from individuals in Ukraine about the challenges you are facing so that we can communicate these to respiratory healthcare professionals and patient organisations to help find solutions.
We have collated all our patient resources that are available in Ukrainian, Russian and other languages from surrounding areas to help people living with lung conditions communicate with healthcare providers who do not speak the same language.
We have started to collect a list of initiatives and activities that are being led by organisations in the ELF Patient Organisation Network. We encourage you to support these where at all possible.
Oksana Kulish-Skaara, CEO of the Pulmonary Hypertension Ukrainian Rare Disease Association (PHURDA), is raising money to help people with pulmonary arterial hypertension (PAH) in Ukraine. The PHURDA headquarters are based in Lviv, Ukraine. Oksana is from Ukraine but is currently living in Norway. With help from financial donors, she can provide life-saving support to members of PHURDA and other PAH patients who are fleeing Ukraine.
Cystic Fibrosis Europe (CF Europe) is working together with local organisations to assess and respond to the needs of people with cystic fibrosis (CF) in Ukraine and those who have fled Ukraine to neighbouring countries.
They have launched a special fundraising campaign to support these efforts and welcome all donations: https://www.cf-europe.eu/
The European Pulmonary Hypertension Association (PHA Europe) is working closely together with their two Ukrainian member associations, providing unrestricted funds to them. They are also:
MATIO Foundation (Poland)
MATIO The Foundation for Help for Families and People with Cystic Fibrosis (MATIO Foundation), in cooperation with other organisations, is collecting drugs and necessary medical equipment to deliver to people with cystic fibrosis in Ukraine and to the hospitals that takes care of them.
They are also helping as many people with cystic fibrosis from Ukraine who are arriving in Poland by providing food, medicines, physiotherapy equipment and a safe apartment.
The Foundation has set up a fundraiser to raise money to provide more help for Ukrainian people with cystic fibrosis.
Rare Diseases Europe (EURORDIS) has created a virtual resource hub. They aim to keep updating this page with more information and news. In the meantime, they would like to highlight that:
European Reference Networks
All European Reference Networks (ERNs) have been working together to set up help for rare disease patient refugees.
A new website (ERNcare4Ua – www.erncare4ua.com) has been developed. It displays a map of all centres on the Ukraine borders (Poland, Romania, Hungary) and the specific contact for each of them. The website also lists and offers contacts to all the ERNs.
You can find out more about the initiative on the official statement. You can also find information about the initiative by searching #ERNcare4Ua on Twitter.
We want to help ensure refugees get access to care and treatment in all the receiving countries. We encourage you to join us in supporting organisations that are providing humanitarian support:
Alternatively, we advise you to contact the Ukrainian Embassy or Representation in your country to receive information on local organisations gathering financial donations or providing supplies and services to help Ukrainian patients, medical personnel and all affected population.
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