Support for NF patients
from Ukraine
Dear NF community from Ukraine!
Dear doctors of NF patients!
Dear doctors of NF patients!
As an umbrella organisation for NF patient organisations in and around Europe, it is our goal to support all NF patients and relatives. Therefore, we would like to do everything possible to ensure the continuation of medical treatment and psychosocial support for NF patients from Ukraine.
We continuously collect and update information and contacts for NF patients and their families, as well as for medical staff treating NF patients, to support them in this uncertain situation.
If you are already safe in another country and need access to NF specialists, we are happy to help. If you are about to leave Ukraine and need help and advice to get to a safe country of choice and receive specialized medical care, please contact: ukraine@nf-patients.eu.
We are working with EURORDIS and the ERN Genturis in coordinating refugees with Neurofibromatosis.
Our actions!
- Identifying hospitals who can provide medications, access to medical equipment and other critical supports to hospitals in Ukraine and neighbouring countries (namely Poland, Romania, Hungary, Bulgaria, and Slovakia) who are treating Ukrainian patients that have been displaced by the conflict. The surrounding countries are graciously welcoming and supporting those from Ukraine, even though there are unbudgeted costs being incurred by healthcare systems that are already stretched from the additional costs of the Covid-19 pandemic.
Reaching out to hospitals across Europe to identify those that can help with diagnostic (MRI or PET/MRI) and treatment procedures for these patients. This is an urgent need, especially for those with an aggressive tumour.
- Working with the ERN GENTURIS to provide Cross Border Health assistance for patients with NF that is especially challenging to treat, ensuring they are seen by the leading NF experts who can provide the best care.
- Exchanging and gathering information with other countries who can provide help for Ukrainian patients.
- Facilitating contacts with clinicians who are able to provide patient consultations and translate medical reports, as well as an extended group able to inform patients, or offer translation in both Ukrainian and Russian language.
As we continue to explore and implement additional actions, NF Patients United recognises the importance of collaboration to offer adequate support to those in need.
Thus far, this initiative has been started by NF Patients United in collaboration with the European Reference Network GENTURIS.
All infos & support
for NF patients from Ukraine:
We are NF Patients United – the global network of NF support groups. We like to do everything possible to ensure the continuation of medical treatment and psychosocial support for NF patients from Ukraine.
We are working with EURORDIS and the ERN Genturis in coordinating refugees with Neurofibromatosis.
You can reach us by email.
Please write to: ukraine@nf-patients.eu
Expert opinion: If you are taking care of an NF patient in Ukraine and wish to hve expert advice, we can connect you with the leading European NF experts through the European Reference Network for Genetic Tumour Risk Syndromes (ERN GENTURIS)
Austria
AKH – Medical University of Vienna
NF pediatric expertise center
(Children 0-18 years)
Tel 0043-404 00 – 31780 (Mon–Fri 13-15 h)
NFKinderZentrum@akhwien.at
www.nf-zentrum.at
AKH – Medical University of Vienna
Internal Neurooncology
(Adults from age 18)
Anna Sophie Berghoff, PhD;
Phone +43 1 404 00-44660
Spain
Hospital maternoinfantil Sant Joan de Déu
(Children 0-18 years)
Passeig Sant Joan de Déu, 2
08950-Esplugues de Llobregat
Tel.: 0034-93 3782600
Neurocutaneous deptm: Dr.Héctor Salvador
hector.salvador@sjd.es
Hospital Germans Trias i Pujol
(Adults from age 18)
Carretera de Canyer s/n
08916-Badalona
Tel: 0034-93 465 12 00
Dr. Ignacio Blanco
iblanco.germanstrias@gencat.cat
Greece
Clinic of neurocutaneous disorders-NF MDT Pediatric Clinic (age group: 0-18years)
Full member of ERN Genturis for NF
Division of Pediatric Oncology Hematology – First Dpt of Pediatrics
National & Kapodistrian University of Athens
“Aghia Sophia” Children’s Hospital
neurocutaneοus.agiasofia@gmail.com
Levadeias 8
Athens, 11527
Tel: 0021320 13 21 37 (Mon-Fri 8.00-15.00)
Netherlands
Dr Rianne Oostenbrink (pediatric)
Sophia Childrens Hospital
Wytemaweg 80
3015 CN Rotterdam
Austria
NF Kinder – Verein zur Förderung der Neurofibromatoseforschung Österreich
Claas Roehl
claas.roehl@nfkinder.at
Croatia
Croatian Neurofibromatosis Association
Victor Crnogorac
nfhrvatska@gmail.com
Danmark
Dansk forening for Neurofibromatosis Recklinghausen
Sara Sara Brebbia Dirksen
s.brebbia@gmail.com
Italy
Associazione Ananas
Claudio Buttarelli
eu.delegate@ananasonline.it
A.N.F. Associazione Neuro Fibromatosi
Corrado Melegari
presidente@neurofibromatosi.it
Netherlands
Neurofibromatose Vereniging Nederland
Karin Hoogendijk
info@neurofibromatose.nl
Spain
Asociación Afectados Neurofibromatosis
Teresa Tejero
direccion@neurofibromatosis.es
Asociació Catalana
Natalia Loose
info@acnefi.com
United Kingdom
Childhood Tumour Trust
Vanessa Martin
vanessa@childhoodtumourtrust.org.uk
Greece
Panhellenic Association of Patients & Friends with NF “Life with NF
Eirini Poupaki
nf.greece@gmail.com
Portugal
APNF-Portuguese Association for Neurofibromatosis
Ana Elisabete Pires
info@apnf.pt
Turkey
Turkey Neurofibromatosis Association
Gulseren Bayraktar
g.altunbayraktar@gmail.com
Switzerland
Schweizerische Neurofibromatose-Vereinigung (SNFV)
Patricia Roduner
snfv@gmx.ch
GER-NF – Groupe d’Entraide Romand pour les Neurofibromatoses
Marc Tissot
ger-nf@gerneurofibromatosis.ch
Ireland
Neurofibromatosis Association of Ireland
Fergal Griffin
info@nfaireland.ie
European Commission
European Civil Protection and Humanitarian Aid Operations
European Cancer Organisation
Cancer patients and healthcare providers in Ukraine and neighboring countries can access multilingual resources here.
Information on the ECO-ASCO Special Network designed to assess the impact of the war in Ukraine and respond to the crisis is available here.
The following free or discounted travel is available for those fleeing from Ukraine:
Austria: All Wienen Linien local public transport and OeBB trains free of charge.
Belgium: SNCB/NMBS trains free of charge.
Bulgaria: BDZ trains free of charge.
Czechia: RegioJet, Leo Express and České dráhy trains free of charge. Can also use Prague public transport and public transport in the Central Bohemian Region.
Denmark: DSB trains free of charge. Ukrainian cars can pass Öresundsbron (Denmark-Sweden bridge) without being charged.
Finland: Onnibus transports and VR trains free of charge. A 95% discount on net fares for one-way Finnair tickets from Warsaw, Krakow, Gdansk, Budapest and Prague to Helsinki.
France: SNCF and Thalys trains free of charge.
Germany: DB trains (https://www.bahn.de/info/helpukraine) and all VBB local public transport free of charge.
Italy: Flixbus transportation and Marino Bus transportation free of charge.
Hungary: MAV trains with a free “solidarity ticket”.
Wizz Air supports Ukrainian refugees by offering them 100,000 free seats on all continental Europe flights departing from Ukraine’s border countries.
Latvia: Latvijas dzelzceļš trains free of charge.
Lithuania: LTG trains and Vilnius buses free of charge..
Luxembourg: all public transport free of charge.
Netherlands: NS trains free of charge
Poland: PKP trains, Polferries, Flixbus transportation from Polish border cities to elsewhere in Polandall free of charge. Can also benefit from discounted tickets with LOT Airlines.
Wizz Air supports Ukrainian refugees by offering them 100,000 free seats on all continental Europe flights departing from Ukraine’s border countries.
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@nf-patients.eu
These are the NF Patients United
member organisations:
ABOUT NFPU
NFPU stands for NF Patients United, and is Europe’s umbrella organization around Neurofibromatosis. By combining the efforts of all organizations, we try to find answers on Neurofibromatosis. Find out more here.
The project to support NF patients from Ukraine is kindly supported by SpringWorks.
