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Young and adult caregivers’ emotional and physical health are usually highly affected: anxiety, depression or feelings of isolation, lack of physical activity, unhealthy eating habits, etc. In this

Diagnosing a rare disease can be a highly complex mission and it often requires great amounts of time. In many cases, several years pass until a correct diagnosis is confirmed by medical evidence. It

The III International Congress for Research on Infantile Gliomatosis Cerebri will be held in Barcelona next September 22nd and 23rd, and it is organized by Izás, la princesa guisante (Spain) and co

Becoming a parent is a challenge and a new chapter for anyone, no matter what the circumstances. There are so many new things to learn, experience, get the hang of and deal with. Add a rare disease

Studies have shown that chronic and rare disease may affect the psycho-social well being of children and also their families. The physical symptoms can be very difficult to handle for a child in early

Rare chronic diseases are common enough, affecting 6-10% of the population and have a great negative psychological and physical effect on patients and their families. Men, women but also children may

As we mentioned in a previous article, PI3K related overgrowth syndromes, which include Proteus syndrome, have been linked to a mutation in AKT, (in this case the isoform AKT I) and has a prevalence

Having a black screen as your main tool of trade entails a number of things. One such thing is that you tend to be seen as a mere facilitator, someone whose work is limited to putting the ideas others

Taking care of a loved one who is chronically ill, having a highly disabling pathology such as a rare disease, can be as rewarding as it is difficult and stressful. This kind of diseases entail for

Patient involvement in medicines development continues to grow, as all stakeholders involved in developing accessible medicines realize they should be involving the end customer - the patient - from

Many families will have already started the summer break period. Occasionally, if you do not prepare on time everything you need for your trip, holidays can be more of a nightmare than a period of

We worry we will bore our friends with our concerns over our child’s disease, and when you say “Do you want to talk about it?” “How are you feeling? Are you coping?” it really helps us feel like we