Your support would be a huge help to maintain the „Hungarian Lifebelt Helpline and Information Centre” as service of HUFERDIS (Hungarian Federation of People with Rare and Congenital Diseases)!
What does ’rare diseases’ mean?
Rare diseases mainly (circa 50-75 %) genetically determined congenital anomalies – especially difficult and takes long time to find the adequate diagnosis. On the way to find accurate diagnosis it’s difficult to find the path to reach the appropriate doctor, clinic, centre, university, expert etc. How often occurs the rare disease? 1 in 2 000 people suffer rare disease. All over Hungary 700-800 000 persons live with rare disease, while this number in Europe is about 30 million.
The road to the correct diagnosis in case of any kind of rare disease is as hard as the adventure of Eszter and István has during this race event at the North Pole.
We are looking for 330 supporters!
What does this 330 km have to do with rare diseases?” Till now the Hungarian Lifebelt Helpline and Information Centre could help about 330 persons per year to find the correct diagnosis, expert, social support or the correct educational institution, which is almost the same number of the length of the race ahead Eszter and István.
Please join to Orsolya Bujka, the European water polo champion and Mohamed Aida world champion and Olympian as a supporter of the Polar race and maintain together the HUFERDIS service for 2017!
Just please sponsor 1 km of the Norway Polar race with a 10 euro/kilometre offer and be part of István Őry and Eszter Szigetvári’s challenge and your name going to be written on the flag that Eszter and István going to pin on the North Pole.
How can you make your contribution?
You can make your contribution by transferring your donation to the following bank account.
Account Holder: RIROSZ (Rare Disease Hungary)
Bank name: ERSTE Bank Hungary
Bank address: Teréz körút 24., Budapest, H-1066, Hungary
Swift : GIBA HU HB
IBAN: HU70 11600006-00000000-22346111
Please don’t forget to give “POLAR EXPEDITION” as a reference at the Notice field.
You can also make your contribution by online payment via secured online payment platform provided by Barion Payment Inc.
Eszte Szigetvári
“Let’s show the strength of our communities! Join me in helping the life of 330 families affected by a rare disease. Please sponsor a kilometre. Thank you!”
Őrí István
“In the recent years, I’ve met many of these families coping with the rare disease- For some of them, this Helpline can mean the only chance to succeed. Please, support our cause. Thank you!”
Our supporters:
Dimény Hanna
Adomány összege:5500
Pogányné Bojtor Zsuzsa
Adomány összege:10000
Köszönjük a kitartást!
Tas Kati
Adomány összege:3000
Nemes cél:) Szerencsés utat!
Vári Bejke
Adomány összege:5005
Havasi Patrícia
Adomány összege:5500
Kitartást és több ilyen kezdeményezést!
Dékány Anett
Adomány összege:5500
Becskeházi-Tar Judit (Progresszivitás Kft.)
Adomány összege:20000
Bartus János
Adomány összege:4000
A lehetőség benned rejlik.
Kádár Réka
Adomány összege:10
Frank Hanna
Adomány összege:2500
About HUFERDIS and Lifebelt Helpline and Information Centre:
Since 2006 the Hungarian Federation of People with Rare and Congenital Diseases (HUFERDIS) has been involved in solving many issues concerning the rare disease treatment and service. HUFERDIS established „Lifebelt” Information Centre and Helpline for Rare Disease Patients. By setting up the Information Centre we are able to help for patients with rare disease and their families, for the professionals who work in this field. Our target is to give validated, understandable and reliable information on time for those people and for their environment to access adequate medical, social, educational service. This can change the quality of their life within a short time! To be able to continue the work would need 3300 EURO. This “life-changing” service aims to help 330 Hungarian families a year!
Mi a ritka betegség? Ezek a betegségek maximum 1 embert érintenek 2000 főből, így jelenleg 6000-8000 féle ilyen betegségről beszélhetünk, ezek 50-75 %-a gyermekeket érintenek! Ismerd meg néhányuk történetét.
Évente átlagosan 330 család fordul segítségért a Ritka és Veleszületett Rendellenességgel Élők Országos Szövetsége által fenntartott Mentőöv Információs Központhoz. Tudd meg hogyan segítünk!
Bolyongás a semmi közepén, éjjel is a szabad ég alatt, úttalan utakon. Fantasztikusan izgalmas kalandot jelent ez a hatnapos kutyaszános túra. Azokon is segíteni szeretnénk vele, akik kevésbé szerencsések!