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Many people, many of them children, are affected by the more than 7,000 rare diseases that exist (an estimated 350 million). So it is necessary to remember that politicians, researchers, communities and society in general must stay involved.
For the awareness that diseases exist, and we must not forget them or put them aside due to their infrequency, we leave you some posts that are important to remember and that will allow us to feel more in solidarity with those who suffer them.
1- "Genetic testing should be more accessible and less expensive. Sometimes it is the only way to get a diagnosis. Even if the diagnosis is difficult, it is better than not knowing. "
2- "The research it's crucial. Not only can it lead to treatments, but it also helps to raise awareness for each individual rare condition. This, in turn, can reduce the waiting time for a diagnosis and the errors that some people receive on their pilgrimage to find out what is happening to them ”.
3- "Even with a diagnosis, it does not mean that you have all the answers. Rare means that there are no (or few) studies, information or treatments."
4- "They are needed more specialists and doctors interested in rare diseases. Let them listen to these patients and their families ”.
5- "The act of hear It seems simple enough, but some people don't do it when information about their rare disease is shared or explained. Especially when you apparently seem normal. "
6- "The disease is rare, but the person is not. Human needs are common. All patients have the right to have quality of life, no matter how many they are in number ”.
7- "The diagnosis and early intervention they are essential. The sooner we know what is happening, the sooner we can act and help the person. "
8- "Invisible does not mean non-existent. People suffering from a rare disease may need supports to attend to their specific needs throughout their lives. They are there."
9- “Rare diseases not only affect patients, but also their families and their environment. They also need support. "
10- "People with rare diseases can often feel alone, isolated and fearful. The tests, procedures, and treatment can be exhausting. It is important that the environment understands what the patient and his family are going through. ".
11- "If you are interested in learning about the disease, please ask. The internet doesn't have all the answers, better seek the support of other people who are going through the same or patient associations ".
You can read more articles similar to 11 phrases that will help you raise awareness about rare diseases, in the category of Childhood Illnesses on site.