In Europe, a disease is considered as rare when it affects 1 in every 2.000 people. Nowadays, there are more than 6.000 rare diseases which affect to 30.000 million European citizen. The 80% of rare diseases have a genetic origin and often these diseases are chronicles and put at risk the life of the person who suffer it (source: EURORDIS).
Primary Immunodeficiency diseases (PIDD) are a group of rare diseases caused by alterations in the immune system of people suffering from them. Patients who suffer PIDD are susceptible to suffer infections and, if these infections are not treated appropriately, they can be fatal or can cause permanent effects that will reduce the quality of life of those suffering from them.
At the Hospital de la Vall d’Hebron- Institut de Recerca (VHIR) Foundation investigate about 200 kinds of rare diseases of 26 different clinical areas. One of the kinds of rare diseases which are investigated by VHIR are the primary immunodeficiency diseases and, in order to improve the techniques of identification and characterization of the mutations of the patients, VHIR has created a Biobank. There is where the researchers collect and preserve blood samples of patients with PIDD.
At the end of November, Niquest began to collaborate with VHIR to help in the investigation of this kind of rare diseases and achieve the following objectives:
- Optimize the diagnosis and offer genetic counselling to the closest relatives.
- Reach a definitive diagnosis offering a new opportunity for treatment, due to the possibility of case revision.
- Encourage collaborative research together with other research centres, nationally and internationally.
Once again the socially committed users of Nicequest have changed their mollusc shells for donations. Thanks to their solidarity, the investigations and the discoveries will be expanded internationally in order to make possible the diagnosis and the cure of rare diseases.
Nicequest new project
Many indigenous women from communities in north-eastern Cauca in Colombia have huge difficulties in selling their crafts. The reason is that these communities are suffering the consequences of armed conflict and, this situation of vulnerability together with the market ignorance and the lack of organization and planning of the production cause this situation.
In its new project, Nicequest will collaborate with CODESPA Foundation to help strengthen the socio-organizational and business processes of 5 associations of indigenous and peasant women of 5 municipalities in north-eastern Cauca.
To obtain the aim of Nicequest and CODESPA, different activities focused in guarantee the trading process of artisan products made by benefited women will be carried out:
- Designing a business plan and annual operating plans
- Identifying new markets and participation in national fairs
- Creating an advertising campaign, a communication strategy and a network corporate image
- Implementing a purchase fund for developing their productive activities
With the help of Nicequest users, 74 indigenous artisan women from five different ethnic groups (guambianos, pots, ambalueños, kiswueñas and mestizo), will see strengthened their socio-organizational and business processes to commercialize their products.
The Worldcoo team.