Petition of vital importance... please read!


My fellow soldiers,

Please read below, it is of great importance.
There are many illnesses out there, and sadly I have one of them.
I ask of you, please read below and please take the time to sign…


(Soliris/Eculizumab Refunding in Belgium.)

In 2001 I was diagnosed with PNH (Paroxysmal Nocturnal Haemoglobinuria.) It is a life threatening and very rare blood disorder characterized by chronic hemolysis in which affected red blood cells (RBCs) are constantly destroyed. There is no cure and blood transfusions are the only way to stabilize a PNH patient. In many cases additional medication is acquired. A bone marrow transplantation is a last resort.

In 2008 I started my Soliris/Eculizumab treatment. It changed my life completely. I went from a once a week blood transfusion, to almost never. The chances of blood cloths with PNH is considerable, but the use of Soliris brings down that risk. My life expectations are higher now and I can take care of my children again. I now can now continue being their mother.

Not only PNH patients can benefit from this treatment. Also aHUS (Atypical Hemolytic Uremic Syndrome) patients can be treated with Soliris with lifesaving results. (Check this petition also: )

Thursday, the 7th of may 2013, The Minister of Public Health Onkelinx will decide if the medication, known as Soliris/Eculizumab, will be refunded or not, in Belgium. Please don’t close your eyes for all PNH and aHUS patients! Support us by signing this petition. Do note that the end date is May 5th 2013.

Thank you very much,

Vera De Jongh

(The form is in Dutch. first it asks your name, last name, city, country and then it asks you if you want your name to become public or not. that’s all people, please…)


I signed!! It is just outrages that they wanna stop the refunding. I noticed people can only sign for the next three days. So I hope a lot of our fellow LPU-ers sign the petition!!

Good luck Vera!!


Thanks Kealyn! \o/ :heart: