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The diagnosis and treatment of a rare disease is often a difficult process. It sometimes takes years for the patient to receive answers. Imagine: you visit one doctor after another and undergo numerous examinations, but there is still no diagnosis. That makes for a helpless and desperate feeling. Why does it take so long to get a diagnosis? This is due to the extremely complex symptoms of a rare disease. Some rare diseases have not even been described yet! This uncertainty creates an additional source of psychological suffering for the patient and the family. Fortunately, there is hope, but we need your help!

You can make a donation to the account number BE75 3630 9458 5851 (BIC : BBRU BE BB) with the mention "rare diseases".

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A hopeful study

Last year, a special study was conducted at UZ Brussel. We investigated how we could improve the patient's experience for one specific disease. The result was astonishing: the patient had more peace of mind and the care process improved dramatically. Now, we want to conduct this research for other rare diseases in our hospital, because every patient is entitled to the best care and guidance.

Helping even more patients with rare diseases

And that’s necessary, as Dirk also testifies. This brave man suffers from Von Hippel-Lindau Syndrome, but that diagnosis was preceded by a long and tiring search. During his first visit to UZ Brussel, all the pieces of the puzzle fell into place. “Finally I feel like I'm in the right place. Here they really listen to me, I have a helpful contact person who I can always contact. I feel like a person again and not just a medical mystery.” However, there are many other patients who, like Dirk, are looking for answers. And with your help we can provide it!

Your support is needed

This research costs money, because every rare disease has a unique care process. So we are counting on your help. The more funds we collect, the more patients we can provide with the necessary guidance. Support our research on rare diseases. Support patients like Dirk. Thank you!

You can make a donation to the account number BE75 3630 9458 5851 (BIC : BBRU BE BB) with the mention "rare diseases".

Dirk shares his story

Dirk has been a patient at UZ Brussel for several years. He suffers from Von Hippel-Lindau syndrome (VHL). This is a hereditary condition that makes Dirk predisposed to tumours. This rare disease is caused by a mistake in a gene. He explains why it is important to support this project.

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"Most tumours in VHL are benign," Dirk tells us. “These benign tumours do give me serious complaints and sometimes these complaints are very drastic. The tumours are in very difficult places: the brain, the inner ear, the eyes, the pancreas, the spinal cord and also in the kidneys. The tumours on the kidneys are malignant. In 2000 my kidneys were therefore removed.”

“A long search and lots of treatments followed in various hospitals”, Dirk continues. “There was no hospital that could help me completely. That was simply not possible, because they did not have the expertise. It was a hell of a journey. I had to undergo kidney dialysis three times a week until one kidney was transplanted. I had surgery for two spinal cord tumours, a brain tumour, a tumour in both eyes, another tumour in the spinal cord, and tumours in the pancreas. And don’t get me started about all the additional treatments and operations I had to undergo. Fortunately, my long search came to an end in 2014.”

Dirk's enthusiasm is immediately clear: “My first visit to UZ Brussel was a revelation for me, a lot of attention is paid to the patient and how s/he experiences the treatment. The patient is central. I had never experienced that before! Finally I feel like I am in the right place. Here, they really listen to me. For example, I have a helpful contact person that I can always contact. I continuously discuss how care can be better arranged. I have a say in my treatment and which doctors care for me. I am in charge of my own body and that does a lot for my peace of mind and confidence. At UZ Brussel I feel like a person again and not just a medical riddle.”

“You get more than a positive feeling here,” Dirk continues. “This hospital is a centre of expertise for my rare disease. That knowledge has been built up through experience; several patients follow this care process and the doctors are therefore specialized in VHL. A care programme was developed around my illness. The doctors think in the long term and can foresee certain evolutions. The result is better treatment.”

 “I come to UZ Brussel once a year for follow-up through the care process. This can increase to several times a year, if additional matters are followed up. In other hospitals I would be admitted for three to four days each time, so I would have to take several days off, but at UZ Brussel all examinations are bundled in one day. That is much more efficient and easier for the patient, as you can imagine. In other hospitals I had to wait a few days for the results, which was always nerve-wracking. But at UZ Brussel, the different departments work together so well that the doctors can give me most of the results at the end of the day. This works wonders for my peace of mind! I’ll say it again, UZ Brussel is the absolute top!”

"For VHL, I refer everyone to UZ Brussel," adds Dirk. “That's the best choice, without a doubt! I inform people who also suffer from VHL and point them to the right people within the hospital. In this way I try to make a positive difference for my fellow sufferers. I recently learned that UZ Brussel also wants to improve care pathways for other rare diseases. I can only encourage this because it makes a world of difference to patients like me. That is why I dare to ask you to support this project, because your donation makes a big difference in the effectiveness of the care process. Support UZ Brussel in its fight against rare diseases. Patients like me are very grateful to you!"

You can make a donation to the account number BE75 3630 9458 5851 (BIC : BBRU BE BB) with the mention "rare diseases".