There is a brutal war going on in one of OIFE’s member countries, and the last couple of days OIFE has received several questions from people who are concerned about the situation in Ukraine. Many are wondering if there is an OI-organization in Ukraine and how they can be of assistance to people with OI in Ukraine one way or another.

OI in Ukraine

There is an OI-organization in Ukraine. The “Ukrainian Organization Crystal People” (UOCP) was created in June 2014, and under normal circumstances, they are in contact with more than 200 OI-families in Ukraine. They are members of EURORDIS and have been a member of OIFE since 2019. You can read more about their work in this article.

Since the war broke out, OIFE has been in a dialogue with the chair of UOCP if there is anything we as OIFE, our member organizations or individuals can do to help. We received a message from them today saying that the situation in Ukraine is very difficult now. People fear for their lives and several are considering to leave Ukraine. But at the moment, the organization is not aware of any families with OI who have fled Ukraine yet. They expressed gratitude to the European OI-community for their concern and support.

What can OIFE do?

At the moment, we can offer our support and connect people who need assistance. We already know people in Finland and Poland who are willing to open their homes for Ukranian refugees. OIFE will also attend a meeting in the Council of Federations of EURORDIS the coming Friday, to discuss if there are other things we as federation can do.

EURORDIS issued a statement on February 24th, where the Ukrainian OI-organization was specifically mentioned and we quote:

“Today, we are calling on the European Union, the United Nations, WHO Europe and other UN agencies, humanitarian organisations and the international community at large to protect the most vulnerable, who are caught in the conflict, unable to flee and without access to humanitarian aid. The current situation should not undermine the reality that the needs of people living with a rare disease are real, huge and unmet. EURORDIS will facilitate a coordinated effort with European Rare Disease Federations and will support patient organisations in Ukraine as best we can to understand the challenges they are facing and to help policy makers and the international community understand the challenges people living with a rare disease face on the ground.»

OIFE can also connect individuals, professionals or healthcare providers who are willing to make an extra effort.

What can you as OI-organizations do?

If you are contacted by people with OI or their families from Ukraine who are refugees in your country, please help them with advice and guide them to hospitals and agencies who can provide competent care. Our member organizations can be contacted in English through the OIFE delegates.

What can you do as an individual?

It is only natural to feel helpless in this situation. We cannot offer any direct help. There are still a couple of things we as individuals can do:

• Donate to the UN Refugee Agency UNCHR – Ukraine emergency
• Donate to large aid organizations with a presence in Ukraine, like Red Cross, Doctors without Borders or UNICEF
• Welcome refugees from Ukraine in your country (or home)
• Be aware of fake news and check the source of all news before you share on social media
• Influence politicians and bureaucrats in your country to help Ukraine

There is not that much the Ukranian OI-organization is able to do at the moment. However – if you should choose to donate to UOCP instead of the aid organizations  – please contact the OIFE and we will find the best way to help.

To all people with OI and your families in Ukraine

Know that you are in our minds and hearts 24/7. The war must end. Peace is what we want!

Warm greetings from OIFE and the international OI-community