Support for the organization's Platinum Research Fund said more work needs to be done to address the stigma of white disease in the UK.
So, what does this look like for those who live in this situation?
"I think my albinism is good because I stand out.
I'm used to it . "year-
Old Zain in east London
"At first I felt very scared and was thinking 'what would I do?
But then I believed in myself in one breath and everything was fine.
Zain's father, Akeel, is a British Pakistani.
His hair is black, his skin is dark, and his eyes are brown.
"It was a bit shocking that Zain had blond hair when he came.
When my wife was born, the first thing I said to him was, "Who have you slept with, the milkman ? "?
But we knew right away that something was not right.
"It is estimated that one out of every 17,000 people suffers from some form of albinism --
A rare genetic condition caused by a lack of pigment melanin, which makes hair, skin and eyes color.
Melanin is also involved in the development of the retina, which means that most patients with albinism have vision problems.
Neither Akeel nor his wife have albinism, but they are carriers of the same genes associated with the disease.
The couple had learned to manage his daily life before Zain left the house.
"If there is bright light in the room or he is going out, Zain has to wear a sun hat, dark glasses and sunscreen to protect himself from UV rays, because ultraviolet rays can cause skin cancer.
"Zain is wearing thick glasses because he has low vision and has an auxiliary tool in the school that can specify scanning the text and enlarging the content on the classroom whiteboard.
We try not to let his albinism stand in his way.
We strive to overcome the obstacles we face in our daily lives . "
But for some, living with albinism means dealing with more than just the disease itself. Twenty-year-
Old Tamin creessoti, an artist from Sheffield, is the only member of her family who has albinism.
Like Zain, she stands out from her relatives for her pale skin and bright eyes --
Even though her parents are white
"It does make it more difficult because there is no-
She said, "one of the people said, 'Oh, look, I have this too, it's normal, it's not a big deal. '".
Tasmin dyed her white hair black, but when she was a teenager, she looked different from her classmates --
She felt it was easy for her to be the target of the bully.
"Being tanned rather than pale is considered beautiful, so something like this makes me stand out --
Especially when you grow up, because there is a lot of pressure to adapt to this specification, and I don't.
Bullying totally ruined myself. esteem.
How can you tell your parents when you can't see who is doing it, "Oh yes, I'm getting strong ".
She said: "I feel a little like a patient with albinism . "
For some, the consequences of albinism may be more serious.
People with this disease are often murdered because their body parts are used for witchcraft in some African countries.
A United Nations expert recently warned that the continuation of this practice could lead to a "complete extinction" of patients with albinism in parts of the continent ". Nineteen-year-
Old Tehseen and its 21-year-
The arsland brothers came to Britain from Pakistan seven years ago.
They are going through the asylum process and claim that their father is also suffering from albinism and is threatened with death at home because of his condition.
"He was tortured and threatened," said Tehseen.
People don't see any difference between us and animals.
Sometimes they say, 'You are aliens, you are not human.
Albinism is a crime in Pakistan.
Source: NHSArslan and Tehseen have now settled in Oldham and are studying in university.
They often play for the blind cricket team, which is not possible in Pakistan.
There, they are excluded from their community, and they believe that albinism is contagious.
"Parents always say to my dad, 'If our kids play with your kids, they become the same color and they get the same vision and they catch the bacteria, 'arslan said.
Roselle Potts, chairman of the Platinum Research Fund, believes that more work needs to be done to address prejudice against patients with albinism.
"Some recent Hollywood films have portrayed the situation in a negative light.
"The condition of patients with albinism is not defined, and this is still something that is widely misunderstood," she said . ".
Tasmin has learned to accept her condition and is confident in her looks.
She recently entered. and won -
Another model competition.
"It changed my opinion of myself --
If I am a monster and an ugly person, how can I do this?
"If someone says, 'Have a magical pill you can take and you won't have albinism, 'I won't take it because my experience has made me who I am now.
"I wouldn't be the same person without albinism.