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Oct 03,2021

The Netherlands – Nederland

About us The Dutch XLH Association was founded on 26 April 2021 to promote the provision of care to patients with X-linked hypophosphatemia. The association is committed to better care and more research and is a discussion partner for healthcare providers, health insurers, pharmaceutical companies and government organizations. We are a 100% volunteer organization and Read More

Around 55 seconds to read

Feb 27,2021

Hanne’s Colour

Rare Disease Day 2021 #ls-676d3f718b4b2.lightwindow-share {}#ls-676d3f718b4b2.lightwindow-share ul.share a, #ls-676d3f718b4b2.lightwindow-share .close {} Share I got the diagnose, when I was 14 years old, the doctors did not know XLH at the time. I was a relief to get a diagnose. I have a good life in spite of the disease. There are many things I can Read More

Around 3 minutes and 4 seconds to read

Feb 27,2021

Samuel’s Colour

Rare Disease Day 2021 #ls-676d3f7197d24.lightwindow-share {}#ls-676d3f7197d24.lightwindow-share ul.share a, #ls-676d3f7197d24.lightwindow-share .close {} Share At what age were you diagnosed with XLH? 3 and a half years. Samuel is 8 years old and was diagnosed with XLH when he was 3 years old. Samuel does not like the dark and spiders but enjoys being with his family and Read More

Around 3 minutes and 13 seconds to read

Feb 27,2021

Florian’s Colour

Rare Disease Day 2021 #ls-676d3f71a3616.lightwindow-share {}#ls-676d3f71a3616.lightwindow-share ul.share a, #ls-676d3f71a3616.lightwindow-share .close {} Share At what age were you diagnosed with XLH? At 6 months old. A little story about achieving one's goals: When I was 5 or 6 years old, I was in hospital in Aschau after having my legs straightened, and from my room I Read More

Around 3 minutes and 48 seconds to read

Feb 26,2021

Alice’s Colour

Rare Disease Day 2021 #ls-676d3f71af118.lightwindow-share {}#ls-676d3f71af118.lightwindow-share ul.share a, #ls-676d3f71af118.lightwindow-share .close {} Share At what age were you diagnosed with XLH? I was diagnosed when I was 4, and I’m a spontaneous case. Alice is 16 years old and was diagnosed with XLH as a spontaneous mutation when she was 4 years old. She enjoys good medical treatment and has been participating in Read More

Around 4 minutes and 23 seconds to read

Feb 25,2021

Leticia’s Colour

Rare Disease Day 2021 #ls-676d3f71bb093.lightwindow-share {}#ls-676d3f71bb093.lightwindow-share ul.share a, #ls-676d3f71bb093.lightwindow-share .close {} Share It was an immense happiness when I was able to get Burosumab from the pharmacy, my parents did not tell me where we were going and when I saw that it was the “vaccine” medication as I speak. I went to the clinic Read More

Around 2 minutes and 51 seconds to read

Feb 24,2021

Kyrina’s Colour

Rare Disease Day 2021 #ls-676d3f71c6264.lightwindow-share {}#ls-676d3f71c6264.lightwindow-share ul.share a, #ls-676d3f71c6264.lightwindow-share .close {} Share Joanny is 12 years old and lives in Brazil. She was not diagnosed with XLH until she was 10 years old and has not had any surgeries yet. Her rare disease has taught her that she is beautiful just the way she is. Read More

Around 3 minutes and 26 seconds to read

Feb 24,2021

Joanny’s Colour

Rare Disease Day 2021 #ls-676d3f71d0d96.lightwindow-share {}#ls-676d3f71d0d96.lightwindow-share ul.share a, #ls-676d3f71d0d96.lightwindow-share .close {} Share Joanny is 12 years old and lives in Brazil. She was not diagnosed with XLH until she was 10 years old and has not had any surgeries yet. Her rare disease has taught her that she is beautiful just the way she is. Read More

Around 3 minutes and 1 second to read

Feb 23,2021

Pietro’s Colour

Rare Disease Day 2021 #ls-676d3f71dc79e.lightwindow-share {}#ls-676d3f71dc79e.lightwindow-share ul.share a, #ls-676d3f71dc79e.lightwindow-share .close {} Share Pietro is 15 years old and lives in Brazil. He was diagnosed with XLH in the second year of his life. He enjoys good medical treatment and has already had three surgeries in his past and is about to have a fourth. He Read More

Around 3 minutes and 0 seconds to read

Feb 23,2021

Mayda’s Colour

Rare Disease Day 2021 #ls-676d3f71e721e.lightwindow-share {}#ls-676d3f71e721e.lightwindow-share ul.share a, #ls-676d3f71e721e.lightwindow-share .close {} Share I would like to tell you that my biggest dream is that a specialist doctor can perform a reconstructive surgery on my legs, in Peru it is very difficult to find a doctor in the social security that can perform an operation, I Read More

Around 3 minutes and 16 seconds to read

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