Skip to content
Generic selectors
Exact matches only
Search in title
Search in content
Post Type Selectors

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.

Please note that this webpage is in progress and will be updated regularly.

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

You can also follow us on Telegram: https://t.me/sosrarediseases

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.

     

    Access to health care & medicines

    The following organisations have reported successfully distributing medicines and supplies:

    • RAZOM
    • Various branches of the Red Cross and Médecins Sans Frontières are active in Ukraine and on the borders.
    • The delivery and logistics company Nova Poshta is making some deliveries from select countries directly to the Ukrainian Department of Defence.
    • Mission Kharkiv provides emergency medical relief for Ukraine (with an emphasis on cancer patients).

     

    Transport options

    • MOAS has reported successfully evacuating patients through medical transport.
    • OneUkraine specialises in medical evacuations.

    Organisations that provide support

    Contact EURORDIS Members in Ukraine

    Please note that if you have entered the European Union, there are patient organisations willing to help.

     

    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.

    ***

    If you have relevant information to share, please get in touch with us at ukraine@eurordis.org

  • Seeking to leave

    Prepare to leave

    If possible, please take valid travel documents and medical records with you when leaving. However, the lack of travel documents or medical documents (certificate of vaccination, COVID-19 test) should not be an obstacle to entering the EU.

    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.

     


    Transport options and accommodation

    • MOAS has reported successfully evacuating patients through medical transport
    • 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.

     

    • A EURORDIS and Airbnb.org collaboration to support rare disease patients leaving Ukraine

    EURORDIS – Rare Diseases Europe is proud to be working with Airbnb.org to support the Ukrainian rare disease community in accessing free, short-term housing outside of Ukraine.

    If you or a member of your immediate family are living with a rare disease, fleeing Ukraine or are already displaced from Ukraine, and in need of short-term housing outside of Ukraine*, please get in touch with your respective patient organisation.

    connects patients from Ukraine with a rare disease with organizations and hospitals, members of the European Reference Network (ERN), with the aim to provide the specialized medical support they may need during this emergency.


    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.

  • Border countries

    Slovakia

    If you are coming from Ukraine, the Slovak Government has established an official website with useful information and important contacts in English, Ukrainian and Slovakhttps://ua.gov.sk/en.html

    Other useful information and contacts can be found in English, Ukrainian, Slovak, Russian at: http://www.ukraineslovakia.sk/

     

    Updates

    Katka Stepankova from the Slovak Cystic Fibrosis Association helps families with CF leaving Ukraine at the Slovak border.  She also helps to provide medicines. She is looking for families in Slovakia who can help people with rare diseases fleeing the war.

     


    Poland

    Screenshot 2022-04-04 at 16.07.43.png

    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.

     

    Are you fleeing the war and looking for help? Do you want to help refugees? – PomagamUkrainie.gov.pl enables coordination of humanitarian aid. It 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.

    Screenshot 2022-04-04 at 16.07.43.pngInformation for patients with rare diseases in Poland: patient organisations https://www.ridkisnikhvoroby.pl

    UNHCR created the ‘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.

     

    Support services in Poland for specific rare diseases:

    • https://www.ridkisnikhvoroby.pl – resource centre for for patients with rare diseases in Poland – verified list of disease-specific organizations, legal guidelines, comprehensive Q&A

     

     

     

    • Message from the President of the Board of the Mucopolysaccharidosis (MPS) and Rare Diseases Association. For support, please contact: biuro@chorobyrzadkie.pl

     

    • For patients living with 22q11 deletion syndrome, please contact 22q11 Polska by telephone +48 696410364 or by email kontakt@22q11.pl

    Updates:

    • 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.

     


    Hungary

    Screenshot 2022-04-04 at 16.07.43.png

    Rare diseases in Hungary

     

    Protection for arrivals from Ukraine

    If you are arriving to Hungary from Ukraine, you may be entitled to temporary protection in Hungary. For more information, see guidance from the Hungarian Helsinki Committee in Hungarian, Ukrainian, English, Russian.

     

    Guidance from the Menedék Association in Hungarian, Ukrainian, Russian and English here.

    For legal aid, contact the Hungarian Helsinki Committee:

     

    For social support and information, contact the Menedék Association:

     

    UNHCR’s contact in Hungary:

     


    Moldova

    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

    Screenshot 2022-04-04 at 16.07.43.png

    Ukrainians fleeing war at home are welcomed to Romania

    Anybody fleeing Ukraine can enter Romania through any of the official border crossings. Ukrainian nationals carrying any valid passport can enter Romania on a short stay status for 90 days and ask for asylum either immediately or at any later point during their stay. Those who do not hold any passport can enter Romania by seeking asylum status at the border crossing.

    On this platform created by Code for Romania in partnership with the Department of Emergency Situations of the Ministry of Internal Affairsthe 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.

    • Who and how can enter Romania?
    • Traveling to/from Romania and situation at the borders
    • Claiming asylum

    Learn more

     

    The Romanian government has made a decision that refugees from Ukraine, no matter if they decide to apply for asylum or other form of protection, will benefit among other things of: primary medical assistance and treatment, emergency medical assistance, long term medical assistance and treatment for acute or chronic diseases that are a direct threat to their lives, the national medical assistance, national health programs.

     

    Rare Diseases in Romania

    The Romanian National Alliance is working with charities and organisations at the border entries to help people with a rare disease to connect to relevant specialty centres.

    Updates

    • The Red Cross Romania is using the humanitarian corridor to Cernauti and sending transports every week.
  • 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

     

    Russian Federation

    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

     

    Other useful links

    European institutions & NGOs / Європейські установи та НУО

     

     

     

    • If you have lupus and you are a refugee because of the Ukrainian crisis, Lupus Europe member organisations have local contacts on the ground. You can contact them for lupus and health-related information if you are travelling through specific European countries or seeking refuge in those countries.
    • Orphanet is a unique resource, gathering and improving knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases.
    • ERNcare4Ua: a map of all centres on the Ukraine borders: Poland, Romania, Hungaria  as well as a list of all European Reference Networks, i.e. 24 networks dedicated to rare and low prevalence diseases.

    Ukrainian government and NGOs

    EURORDIS information

    Additional information 

    • Ukraine Take Shelter: an independent platform connecting Ukrainian refugees with potential hosts and housing
  • EURORDIS Info

    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.

    Additional reports will follow.

    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.

    ***

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

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

     

    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

     

    Useful links and documents

     

     

     

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