One kilometre for 1 child living with rare disease

Two Hungarian adventurers, Eszter and István are taking part at the famous Fjärräven Polar race in Norway in this April. Their main goal is to raise awareness and funds for children born with rare diseases. Please sponsor one of their 330 kms of the total Polar race distance supporting the Hungarian Rare disease Helpline with 10 euro.

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.