Ukraine - Rare Disease Resource Centre | Україна - Ресурсний центр з рідкісних захворювань

Ukraine – Rare Disease Resource Centre | Україна – Ресурсний центр з рідкісних захворювань

This is a resource centre for people living with a rare disease from Ukraine, both those who are currently in the country and those who have sought refuge in Europe. It is also for the patient organisations looking to help them.

If you have relevant information to share, please contact us at ukraine@eurordis.org.

Щоб відобразити цю сторінку українською мовою, натисність тут. To display this page in Ukrainian, click here.

Staying in Ukraine

Many people with rare or chronic conditions are unable to travel and so are remaining in Ukraine. We hope to link them to information on how those in Ukraine can get the support they need, and will update this page accordingly.

Organisations that provide support

Contact EURORDIS Members in Ukraine

Rare Diseases Hub Ukraine based at the National Children’s Hospital Okhmatdyt in Kyiv is the virtual coordination center which connects patients with rare diseases from Ukraine with organizations and hospitals that are members of the European Reference Network (ERN) in order to provide the specialized medical support they may need during this emergency.

Additional resources

Ukraine, in an emergency order dated 03/03/2022 № 406, has allowed the import of medicines into the territory of Ukraine without complying with the requirements of Part 1 of Art. 17 of the Law of Ukraine “On Medicinal Products”. This means that certification or procedures that would delay the transportation of medicine, such as licences, requirements to use only certified means of transport or strict storage conditions, have been removed.

In February 2022, the Verkhovna Rada of Ukraine adopted the law “On Compassionate Use Programs” which regulates the implementation of programs for providing patients with compassionate medicines (free of charge). The law provides for the creation of conditions in Ukraine for the access of seriously ill patients to innovative treatment.

Clinical trials. The Ministry of Health of Ukraine and SE “State Expert Center of the Ministry of Health of Ukraine” ensure the continuations of clinical trials of medicines in Ukraine, namely, they continue to carry out continuous examination and approval of CT materials and regulatory supervision of CT . Information about CT in Ukraine, published by SE “DEC of the Ministry of Health of Ukraine”: 2022, 2023

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Seeking to leave
Prepare to leave

All EU countries bordering Ukraine allow entry to all people fleeing war in Ukraine on humanitarian grounds regardless of whether or not they have a biometric passport. This applies also to children. If you have Ukrainian nationality and a biometric passport, you can enter the EU by presenting your passport at the border. For all the other cases, Member States will admit you on humanitarian grounds. More information

Transport options and accommodation
- OneUkraine specialises in medical evacuations.
We have seen very impressive examples of grassroots efforts of EURORDIS member patient organisations supporting vulnerable patients to cross the border safely and access appropriate accommodation and care on the border. Organisations like Fundacja SMA, SMA Polska, and NoRo in Romania have set mobilised effective networks to support dozens of families to safely cross into Poland, Romania and elsewhere and get access to care on the other side.

Eligibility

The Ukrainian Government has simplified the border crossing procedure for certain categories of people with disabilities and their carers. In particular, according to the decision of the Government, people with disabilities (groups I and II), regardless of their age, have the right to cross the state border of Ukraine. Also, the Government stated that each person with a disability who needs constant care can be accompanied by one of the first-degree relatives (direct family members) who reached 18 years of age or another person of 18 years of age or older who provides care in accordance with the Ukrainian law. More information

What would be your rights

Once you have crossed into the EU you have a number of options depending on your personal circumstances. The authorities will inform you accordingly about your rights. Thanks to a solidarity mechanism set up by the Commission, people in urgent need of specialised hospital treatment can be quickly transferred between the Member States for such treatments, with 10,000 beds already available. More information
Border countries
Slovakia
- National contact details
If you are coming from Ukraine, the Slovak Government has established an official website with useful information and important contacts in English, Ukrainian and Slovak: (SK / UK / EN)

Other useful information and contacts can be found in English, Ukrainian, Slovak, Russian at: http://www.ukraineslovakia.sk/
- Organisations helping on the ground
Slovak Red Cross (UK / SK)
Ukraine-Slovakia Help (UK / SK / EN) Hotline +421 911201889 (Telegram, WhatsApp or Viber), email: ukrajina.sk.sos@gmail.com

Poland
- National contact details
The Polish government has established a phone line +48 47 721 75 75, e-mail ukraina@udsc.gov.pl and an official website https://www.gov.pl/web/ua with information and resources for Ukrainians.

PomagamUkrainie.gov.pl is a tool for people in need of aid, as well as organisations and individuals interested in providing it. Support will be provided from the Government Strategic Reserve Agency and other state institutions, as well as from local government, social and private funds.

Medical assistance helpline (free of charge) – 800 137 200 First contact assistance in UA, EN and PL set up by the Polish government.
- Organisations helping on the ground
UNHCR createdthe ‘HELP’ website for refugees and asylum-seekers in Poland, their family members, and people who assist them. On this website you will find useful information and web links.

Information for patients with rare diseases in Poland:
- Resource centre for for patients with rare diseases in Poland – verified list of disease-specific organizations, legal guidelines, comprehensive Q&A
- Resource centre for Ukrainian patients with immunodeficiencies in Poland
- For patients living with SMA
- For patients living with 22q11 deletion syndrome, please contact 22q11 Polska by telephone +48 696410364 or by email kontakt@22q11.pl
Updates
- EURORDIS has published a report highlighting key issues and recommendations to support families affected by a rare disease displaced from Ukraine to Poland. This report was completed in collaboration with a number of organisations working in Poland and Ukraine.
- Polish MoH has appointed a special representative to coordinate the treatment and transfer of Ukrainian patients. More info
- A new website established by Witold Wydmański connects refugees seeking medical assistance with doctors who want to provide it free of charge: lekarzedlaukrainy.pl
- Since the day the war broke out, eduinstitute.org has been supporting patients with rare diseases who are fleeing the horrors of war. They help them both in Ukraine and after reaching Poland. Read their full report here.
- The Healthcare Educatoin Institute (EDU) launched the project Brave Rare Ukraine to show the needs of patients with rare diseases who were forced to leave Ukraine due to the war. Learn more about the project
Hungary
- National contact details
Hungarian Directorate General for Aliens Policing Information for people fleeing Ukraine (EN / UK)
Government hotlines
– From Hungary 06 80310310
– From Ukraine 0800 504546
- Organisations helping on the ground
Guidance from the Menedék Association in Hungarian, Ukrainian, Russian and English here.

Rare diseases in Hungary
- National alliance in Hungary – Rare Diseases Hungary
- Rescue Information Centre and Helpline :+36 1 790 4533
- List of rare disease patient organisations in Hungary
Moldova
- National contact details
Useful information for citizens of Ukraine in Moldova
https://dopomoga.gov.md/

Hotline of the Bureau for Migration and Asylum (call from Moldova) 0 800 015 27

Hotline of the Bureau for Migration and Asylum (call from Ukraine) +373 22 820 007

Romania
- National contact details
Government website with information for help to Ukrainians (RO / UK / EN)
Government website dedicated to help Ukrainians (RO / UK)

Infoline +40 219590
- Organisations helping on the ground
On the platform created by Code for Romania in partnership with the Department of Emergency Situations of the Ministry of Internal Affairs, the UN Refugee Agency, the International Organization for Migration and the Romanian National Council for Refugees civilians fleeing the war in Ukraine can find all relevant information about seeking protection in Romania.

Rare Diseases in Romania
- EURORDIS Members in Romania
- Romanian National Alliance for Rare Diseases. Email: office@bolirareromania.ro

Other European countries

Austria	Finland	Luxembourg
Information for Ukrainian Citizens in Austria https://cutt.ly/4AOuGW3Help in Austria https://cutt.ly/cAOiVmiIf you are in urgent need of assistance, please contact the hotline: +43 1 2676 870 9460Pro Rare Austria, Allianz für seltenen Erkrankungen prorare-austria.org office@prorare-austria.org	Instructions on arriving in Finland from Ukraine https://cutt.ly/HAA7f2NHARSO-Rare Disease Alliance Finland www.harso.fi/en/home/ international@harso.fi	Arrival of people fleeing the war in Ukraine https://cutt.ly/yAA6Wa4Hotline managed by Caritas and the Red Cross, with the support of the Ministry of Family Affairs +352 621 796 780ALAN – Maladies Rares Luxembourg www.alan.lu info@alan.lu
Belgium	France	Malta
Immigration office, Ukraine https://cutt.ly/8AStHhdFederal Government’s Information website https://info-ukraine.be/enRare Disease Organisation Belgium (RaDiOrg Belgium) www.radiorg.be info@radiorg.be	Information for Ukrainian citizens wishing to enter French territory and/or stay here https://refugies.info/enAlliance Maladies Rares French Rare Diseases Alliance https://cutt.ly/XJgXb7V alliance@maladiesrares.org	The Ministry for Foreign and European Affairs is offering to cover the accommodation costs of Ukrainian nationals and their dependents fleeing from the current conflict in Ukraine. https://cutt.ly/1AShDnYNational Alliance For Rare Diseases Support – Malta http://www.rarediseasesmalta.com/
Bulgaria	Germany	Moldova
National portal for the people affected by the war in Ukraine https://ukraine.gov.bg/Bulgarian Red Cross hotline 0800 20101National Alliance of People with Rare Diseases (NAPRD) rare-bg.com tomov@raredis.org	Escape, entry and shelter: The war in Ukraine https://cutt.ly/FA8bYPPFrequently asked questions about entering Germany from Ukraine and residing in Germany https://cutt.ly/1ADslgr (in English) https://cutt.ly/aADsv2i (українською)Allianz Chronischer Seltener Erkrankungen (ACHSE) German National Alliance for Chronic Rare Diseases www.achse-online.de info@achse-online.deGerman Help Center (contacts and organisations to contact when in need for medical support) https://cutt.ly/vA04G7J	Useful information for citizens of Ukraine in Moldova https://dopomoga.gov.md/Hotline of the Bureau for Migration and Asylum (call from Moldova) 0 800 015 27Hotline of the Bureau for Migration and Asylum (call from Ukraine) +373 22 820 007
Croatia	Georgia	Netherlands
Leaflet with useful information for displaced persons from Ukraine https://cutt.ly/LADgx1ORare Diseases Croatia www.rijetke-bolesti.hr rijetke.bolesti@gmail.com	To date, Georgia does not have a dedicated centre to help refugees from Ukraine. The Georgian Foundation for Genetic and Rare Diseases is available for questions: grd.georgia@gmail.com	Coming to the Netherlands as a Ukrainian https://cutt.ly/hADdH1iFor refugees in the Netherlands https://help-ukraine.nl/refugeeVSOP – Vereniging Samenwerkende Ouder En Patiëntenorganisaties www.vsop.nl vsop@vsop.nlUkraine: effects on stay or application for Ukrainians and Russians https://cutt.ly/6ADf0JG
Cyprus	Greece	Portugal
Cyprus Alliance for Rare Disorders (CARD) http://raredisorderscyprus.com/ card@raredisorderscyprus.com	Information for Displaced Persons from Ukraine https://cutt.ly/ZADhcLTHotline (0030) 213 162 9600	UKRAINE: INFORMATION FOR PEOPLE ARRIVING IN PORTUGAL https://cutt.ly/eADh10oHotline 211 950 500RD-Portugal – União de Associações das Doenças Raras de Portugal raras.pt unificardoencasraras@gmail.com
Czech Republic	Ireland
Regional Aid Center for Ukraine https://cutt.ly/uASzdIlInformation for Ukrainian citizens in the Czech Republic https://cutt.ly/KASzUbHHotline +420 974 801 802Stand With Ukraine – all you need to know https://www.nasiukrajinci.cz/ua https://www.stojimezaukrajinou.cz/enRare diseases Czech Republic (Česká asociace pro vzácná onemocnění (ČAVO)) http://vzacna-onemocneni.cz cavo@vzacna-onemocneni.cz	Supports for those coming to Ireland from Ukraine (Arriving in Ireland, Accommodation, Social welfare supports, Employment, childcare & education, Healthcare) In English http://l.eurordis.org/GtJU, українською http://l.eurordis.org/8tK3 and на русском http://l.eurordis.org/EtLrDetailed information on Healthcare services for Ukrainian nationals in Ireland In English http://l.eurordis.org/PtZs, українською http://l.eurordis.org/btXh and на русском http://l.eurordis.org/wtCyRare disease specific information is available from the Information Service at the National Rare Disease Office: rare.diseases@mater.ie or phone 01 854 5065 (Mon-Thurs inclusive 9.30am -1.30pm)FAQs – for Ukraine Nationals and Residents of Ukraine https://cutt.ly/SADj5TGThe Minister for Justice has announced the immediate lifting of entry visa requirements for Ukrainian nationals https://cutt.ly/VADkaGwSocial Welfare supports for those arriving from Ukraine under the EU Temporary Protection Directive https://cutt.ly/7ADkWm1	GBUZ MO “Research Clinical Institute of Childhood of the Ministry of Health of the Moscow Region” provides medical care to children suffering from cystic fibrosis who arrived from Ukraine to Russia. For medical help, you can contact the cystic fibrosis department at the address: Mytishchi, st. Comintern 24A, building 1. Phone for making an appointment: 8 (498) 699-53-20 (ext. 1800) from 09.00 to 15.00 from Monday to Friday. Email address: 84955873366@mail.ru To receive medical care, you must have a passport and a birth certificate with you. In addition, we inform you that for all patients and their parents there is a hotline 8 (800) 555-87-08 from 10.00 to 12.00 (Moscow time) on Mondays, Tuesdays, Thursdays, Fridays Doctors of the Cystic Fibrosis Center at the Research Clinical Institute of Childhood of the Ministry of Health of the Moscow Region will answer your questions and help you.
Denmark	Italy	Slovenia
Information to Ukrainian citizens https://cutt.ly/6AT45HbRare Diseases Denmark (Sjaeldne Diagnoser) http://www.sjaeldnediagnoser.dk/ mail@sjaeldnediagnoser.dk	Federazione Italiana Malattie Rare (UNIAMO) Italian Federation for Rare Diseases www.uniamo.org segreteria@uniamo.org	Slovenia’s assistance to the citizens of Ukraine https://cutt.ly/jADkMfiHotline inside Slovenia 080 41 42 Outside of Slovenia +386 1478 7530
Estonia	Latvia	Spain
Information on the war in Ukraine https://cutt.ly/cAT7tqGInformation for Ukrainian refugees in Tartu https://cutt.ly/QAT7uAcState helpline 1247 or +372 600 1247Information to Ukrainian war refugees https://cutt.ly/GAT7oLs	Information for Ukrainians coming to Latvia https://www.ukraine-latvia.com/Unified information helpline “Help to Ukrainians in Latvia” +371 27380380Latvian Alliance for Rare Diseases https://retasslimibas.lv/ alianse@retasslimibas.lv	AECID: Spanish Agency for the International Cooperation and Development https://cutt.ly/KAScqYAFEDER – Federación Española de Enfermedades Raras www.enfermedades-raras.org administrativodireccion@enfermedades-raras.org
United Kingdom	Lithuania	Sweden
Advice for Ukrainians arriving in the UK https://cutt.ly/FJgLuqF Guide for people new to the UK that are living with Inherited Metabolic Disorders (IMDs) https://bit.ly/3OxCsjH	Information for Ukrainian citizens https://migracija.lrv.lt/lt/naudinga-informacija/ukraina-ukrayina-ukraina-ukraineHotline for Ukrainians +370 5 271 7112Association For Children Rare Diseases http://www.retosligos.lt	Free helpline for refugees from Ukraine to Sweden +46 8 505 501 70Information for those who are arriving to Sweden from Ukraine https://cutt.ly/JAT7j9tRare Diseases Sweden (Riksförbundet Sällsynta Diagnoser) www.sallsyntadiagnoser.se info@sallsyntadiagnoser.se

EURORDIS early response includes

1. Supporting Ukrainians living with a rare disease to relocate or leave the country, through information resources, and working with local patient groups and partners

2. Supporting Ukrainians living with a rare disease when arriving as refugees in neighbouring countries and to relocate across EU, through patient networks and partners catalysing new solidarities

3. Informing European, EU-national and Ukrainian authorities of the specific challenges facing Ukrainians living with a rare disease and advocate for them to address these issues

4. Liaising with Humanitarian organisations to both help solve specific requests for help and to advocate more broadly that they integrate PLWRDs in their response to the crisis

EURORDIS Reports

EURORDIS has published a report highlighting key issues and recommendations to support families affected by a rare disease displaced from Ukraine to Poland. This report was completed in collaboration with a number of organisations working in Poland and Ukraine.

EURORDIS statements

16 March, Paris – Uniting for the two million Ukrainians living with a rare disease

Three weeks into Russia’s invasion of Ukraine, on 15 March, the EURORDIS’ Board of Directors held a meeting to review the situation of the rare disease patient community in the country and set the course of action. The response to this new crisis is at the core of the EURORDIS’ mission and values. It is believed that the overall situation might worsen, with many people with rare diseases and their carers being unable to travel to another country or access essential medicines and basic necessities in Ukraine and those who are able to leave the country facing challenges related to displacement.

EURORDIS’ response is two-fold: both immediately responding to the needs of people living with rare diseases and advocating on behalf of their specific needs with the support of our multistakeholder networks.

24 February, Paris – EURORDIS-Rare Diseases Europe calls on the international community to prepare for a potential crisis and address the challenges of people living with a rare disease in Ukraine (also in Ukrainian/також українською)

EURORDIS-Rare Diseases Europe stands in solidarity with the Ukrainian people and would like to extend support to the Ukrainian rare disease community. 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.

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9 March – “Urgent Support and Aid Needed for Ukrainian Patients with Rare Diseases and their Families” by Michael Wilbur and Anna Kole (EURORDIS) in the European Medical Journal.

8 April – “Rare-disease groups try to save Ukrainian patients” in National Journal, with a contribution from Michael Wilbur, EURORDIS Chief Operating Officer.

Useful links and documents

How patient organisations can help patients from Ukraine	The outline of the needs of the rare disease community in Ukraine

Eurordis - Rare Disease Europe