Statement in support of the Ukrainian Cystic Fibrosis Community

Cystic Fibrosis Europe (CFE) and the European Cystic Fibrosis Society (ECFS) are apolitical organisations dedicated to improving the lives of people with cystic fibrosis (CF). Cystic Fibrosis Europe (CFE) is the federation of national CF Associations in Europe (it currently has members in 39 countries). Founded at the European CF Conference in Belfast in 2003, CFE represents persons with CF and their families in Europe. Cystic Fibrosis Europe works in close collaboration with other international organisations and is an active partner in several European projects. The European Cystic Fibrosis Society (ECFS) is an international community of scientific and clinical professionals committed to improving survival and quality of life for people with CF by promoting high quality research, education and care.

 

We join voices to condemn the invasion of Ukraine and to call for aggression to cease. We hope for a fast resolution to this crisis without further violence.

We stand united in our support of the Ukrainian people, in particular the CF community. We stand with people with CF and their families in Ukraine, as well as our medical colleagues working to care for people with CF and our scientific research colleagues in the field of CF.

We call for medical and humanitarian organisations to be given unrestricted safe passage to bring aid to those in need. We remind that all patients, including men, women and children with CF, receive special protection under the Geneva Convention, as do the medical personnel caring for them.

We are working together with local organisations to assess and respond to the needs of people with CF in Ukraine and those who have fled Ukraine to neighbouring countries.

 

We have launched a special fundraising campaign to support these efforts. We welcome all donations on:

BE28 0016 6533 6820 (SWIFT: GEBABEBB)

Please mention ‘support Ukraine’ in your transfer notice.

 

At CF Europe we are deeply saddened and shocked by the terrible events in Ukraine and our hearts go out to all who fear for their lives, have lost loved ones or have fled their home, sometimes having to leave family behind. We are especially concerned for the nearly 1000 Ukrainian people with CF, and we know you are too. We believe it’s important to take action together, and we gladly offer our help coordinating the efforts and initiatives that patients organisations are eager to set up in various countries. We are grateful for the numerous messages we receive from those offering to help in these difficult times.

 

Please read on for updates on current developments, to find out about the various initiatives set up to support the CF community from Ukraine and

help us spread the word on social media by sharing our Facebook and LinkedIn updates!

 

26 April – Two months have passed since the start of the conflict in the Ukraine and we would like to give an update on our activities to all those who kindly approached CF Europe offering to help in this very difficult time.  

We are extremely grateful to all those organisations, pharmaceutical companies and individuals who donated funds, medications, devices or supplies. We are deeply impressed and moved when hearing about the different ways in which solidarity is being shown to the CF community from the Ukraine, by people in different countries packing and sending aid, and by all those who receive and sort these donations and attend to any other needs.  

Since the end of February, CF Europe has been coordinating various offers of help that kept emerging in different countries while mapping the changing needs of the CF community from the Ukraine.  

We have been in contact with sister organisations, EURORDIS (Rare Disease Europe), ELF (The European Lung Foundation), the Cystic Fibrosis Foundation in the US and worked alongside colleagues at the ECFS Clinical Trials Network and Registry. 

Patients’ organisations in the Ukraine, and neighbouring countries (Poland, Slovakia, Romania, Hungary and Moldova), made us aware of the need to support people with CF remaining in the country and those fleeing to neighbouring countries or to Western Europe. These organisations have been working tirelessly to provide medicines, housing, travel arrangements and humanitarian aid to the CF community affected by the conflict. CF Europe has kept in touch with them continuously, to remain up to date on the changing needs on the ground and assess how the donations received through our fundraiser could best support these vital activities.  

We have also been working closely with multiple pharmaceutical companies wishing to donate medicines to people with CF in Ukraine, taking into account the legal, regulatory and logistic challenges of getting these donations to Ukraine.  

In March, wishing to coordinate a response systematically, we created a strategic framework: a document highlighting the urgent plight of people with CF affected by the war and outlining a collaborative strategy to support them.  Additionally, we implemented a protocol for patients’ organisation in the Ukraine and neighbouring countries to ask emergency funding. Those applying for funding need to motivate why the money is needed and provide evidence of how it is spent (e.g. pictures, receipts).  The strategic framework and the emergency funding request process were reviewed and approved by the Board of Directors during an emergency board meeting and shared with patients’ organisations in Eastern Europe.  

Thanks to our donors we have already been able to approve the first request for funding from a Ukrainian patients’ organisation. The organisation presented their case very thoroughly, motivating how funding would be used and providing an estimated budget needed to allow the association to survive and take care of patients in Ukraine for a period of three months. The Board of Directors carefully reviewed and approved the request, asking the association to provide a monthly report to which a monthly instalment will follow.   

Lastly, through a survey, we collected information on various initiatives emerging all over Europe to help the Ukrainian CF community.  

Here you can find a continuously updated list of fundraisers: https://www.cf-europe.eu/ukraine-make-a-financial-donation/ 

At present, the most effective way to help the CF community from Ukraine is by sending funds to us at CF Europe or to one of these fundraisers. 

We are also gathering information for people with CF fleeing the Ukraine and for those willing to host them:  https://www.cf-europe.eu/information-and-help-for-patients-with-cf-and-their-families-arriving-from-ukraine-to-countries-in-europe/ 

From the very beginning of the conflict, we have done our best to update the CF community and donors through regular updates on our website and Facebook page which we invite you to follow: https://www.facebook.com/CysticFibrosisEurope 

 Thank you for your generosity and support! 

 

 

15 April – We are in discussions with multiple pharmaceutical companies who wish to donate medicines to people with CF in Ukraine and neighbouring countries. We’re working hard to figure out how to handle the legal, regulatory and logistic aspects of getting these donations to Ukraine from different countries in Europe.

We are grateful to DEKAsvitamins.com and Callion Pharma, from the Netherlands, who have donated a two-month supply of DEKAs vitamins to support 500 people with Cystic Fibrosis. Thanks to the MATIO Fundacja in Poland, these will be distributed to Ukrainian refugees and to people with Cystic Fibrosis remaining in Ukraine.

8 April – Last week, our board of directors received a request for financial assistance from a Ukrainian patients organisation. Reviewing the organisation’s detailed and urgent appeal, the board approved their request. We are delighted to report that, some of our funding will be dedicated to supporting the organisation’s precious work in these incredibly difficult times.

7 April – We are extremely grateful for the generous donations we are receiving from individuals, charities, pharmaceutical companies and other organisations. It is thanks to these donations that we can help people with CF who are impacted by the conflict in Ukraine.

Today our special thanks go to Child Health International, a UK charity focussed on improving the lives of children and young adults with cystic fibrosis and to Suomen CF-yhdistys ry a CF association in Finland.

Both are supporting our work by encouraging their communities to donate to our fundraisers for Ukraine.  Thank you very much for your help!

25 March – The number of initiatives to support and show solidarity to CF patients from Ukraine and their families just keeps on growing. We are grateful to all those who are helping us gather crucial resources and updating us on what is being done in different countries. From Germany, Mukoviszidose e.V. has put together important information for people seeking help with CF from Ukraine as well as for people in Germany who would like to help people with CF from Ukraine. The information is available in Ukrainian, Russian and Polish as well as German and English: https://www.muko.info/spendenhelfen/ukrainehilfe/ukraine-faqs

23 March – As mentioned in our last update, we sent out a survey to collect information on how medical assistance is being provided and how countries across Europe are making themselves available to welcome patients arriving from the Ukraine.

We want to use this website to communicate the information received, hoping it will be useful for patients and their families in Ukraine, those who are having to leave the country and those who are caring for them (responding to their medical and everyday needs, providing emotional support, organising travel and accommodation).

This week we started by creating a new page on our website where to find guidance and information on what to do when arriving in a new country from the Ukraine: where to register, where to get medical assistance, which rights and benefits are available.

Please share this with your contacts and help us improve the page by suggesting relevant information and resources.

Also, just a quick reminder that if you wish to make a financial donations you can find information here.

18 March – Since our last update we have continued observing the developments in Ukraine, keeping in contact with patients associations and CF centres in Ukraine and neighbouring countries and liaising with pharmaceutical companies.

We have been keeping up with an impressive number of offers of help and support. This week we have been in contact with DEKAsvitamins.com & Callion Pharma who will be donating a two-month supply of DEKAs vitamins to support 500 people with CF in Ukraine and those who left the country.

We are extremely grateful for these offers and for the work of patient organisations helping families and individuals get the care they need, distributing medications across borders, welcoming those who have to leave Ukraine.

As the situation is constantly changing we sent out a survey to collect information and map all the various fundraisers and initiatives (donation of medications, devices, humanitarian aid) emerging all over Europe.

We will keep updating the information here on the website and on our Facebook page. Please continue checking in if you want to keep informed.

If you wish to contribute to these initiatives, you can make a direct donation into our account (see below) or to any of these verified fundraisers set up by our member or sister organisations. Please help us spread the word on these campaigns and do feel free to get in touch with any questions or suggestions!

8 March – The situation in Ukraine is constantly changing so it is impossible to get a clear picture of what is going on and the full impact this is having on people with CF. However, CFE is continuously monitoring the situation and is in close contact with the Ukrainian patient association and in their neighbouring countries.

Since our last update, we have received a message from the Ukrainian patient association and the national CF centres that they are in dire need of additional critical CF treatments. To meet these needs as efficiently as possible, we have been working closely with several global pharmaceutical companies, to see how we can send these supplies across to ensure Ukrainian CF patients get the treatments they need.

Widening our call for support, MECFA, the Middle East CF Association has gracefully asked their members for donations to support people with CF in Ukraine. Additionally, Child Health International has issued its statement today asking that any donations for the Ukrainian relief effort to be directed to CFE so that we can assist the CF medical teams in Lviv and the neighboring countries.

All donations we are receiving in kind is being sent to the HUB in Poland so they can try and send it across to Ukraine. If you have any questions or would like further information, please do get in touch with us.

7 March – CFE is monitoring the situation hour by hour and is in close contact with the association in Ukraine and the associations in the neighbouring countries. Next to that, we are trying to partner up with sister organisations to get help to those in need as efficiently as possible. We have been in contact with EURORDIS – Rare Disease Europe who are liasing with the Red Cross. This could be a way of getting goods to those still in Ukraine. We’ve also been in touch with the Cystic Fibrosis Foundation in the US and are talking to our colleagues at the ECFS Clinical Trials Network and Registry on a daily basis. Finally, we’ve been contacted by several pharmaceutical companies asking us how they can help.

We are also compiling information for Ukrainian people with CF who have fled the country and need medical care, housing etc. elsewhere in Europe. Please click here.

Meanwhile, the first donations are coming in. We would therefore like to express our sincere gratitude to all who have contributed.

2 March – CFE was in contact with the patient association of Ukraine, and the associations of Ukraine’s neighbouring countries (Poland, Slovakia, Romania, Hungary and Moldova). At this moment there are two groups of people with CF in need, those who are leaving, or already left Ukraine, and those that are in Ukraine. Most people with CF are still in Ukraine.

We know there is a group of patients that are crossing the borders with Slovakia, Poland, Hungary, Romania. The POs in those countries are actively helping the families with medicines, housing and other primary needs.

For the group of people who are still in Ukraine, we are organizing to get the most urgent drugs to the patients, together with the POs of the neighbouring countries.

Make a financial donation

At present, making a donation is the most efficient way to support the coordinated actions. We welcome all donations on

BE28 0016 6533 6820 (SWIFT: GEBABEBB)

Please mention ‘support Ukraine’ in your transfer notice.

 

Here you can find a list of local fundraisers set up by member or sister organisations.

 

If you have any questions, please contact Hilde at hilde.dekeyser@cf-europe.eu.

 

Thank you!

 

 

Our mission

CFE is striving for a longer and better life for people with cystic fibrosis.

Our vision

CFE envisages a future where a final cure is found and access is given to all persons with Cystic Fibrosis.

Our strategy

By supporting national patient organisations and building expertise and advocacy capacity for European policy, research and care, we will drive up standards for everyone living with CF in Europe.

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Contact information

  • Hilde De Keyser
  • hilde.dekeyser@cf-europe.eu
  • 0032 - (0)2 61 32 716
  • Driebruggenstraat 124, 1160 Brussel
  • Chamber of Commerce number: 0640.670.746

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