Help support research into rare diseases

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Queen Leticia supporting Rare Disease Day Madrid

AS common diseases are brought under control around the world, so, the preponderance of the growing number of rare diseases becomes more obvious, but the 8,000 rare diseases that are said to exist cannot expect to raise huge amounts of funds for research.

Queen Leticia has helped to boost the campaign promoted under the heading ‘Research is our hope’ by meeting with sufferers, carers and researchers as it is estimated that nearly three million people in Spain are affected by some form of rare disease.

More than 300 patient groups belong to FEDER (The Spanish Association for Rare Diseases) and that group wants to stress the importance of research and believes that funds for such research should have priority in the national budget as more research into rare diseases will allow improvements in areas such as access to diagnosis, treatments and prevention.

DEBRA, the Butterfly Children Charity is actively participating in the campaign by sharing and promoting it on their social media networks and through their nine charity shops across Spain. In addition the Marbella Council has accepted an invitation to join the campaign meaning that they will replicate the claims in the local government meeting therefore officially acknowledging the demand for research into rare diseases in Spain.

The skin of butterfly children can be so sensitive that the body must be wrapped in gauze to protect it from the mildest friction. Even the brush of a bed sheet can cause a burn-like blister. Blistering also occurs internally (in the mouth, oesophagus, intestine, airways, urinary tracts and even the inside of the eyelids) leading to further suffering and serious health problems.

Butterfly skin also becomes a disability because people suffering from this condition require intensive daily care from their relatives. They also tend to lose the use of their hands and feet due to the extent of the blistering and the retraction of the skin in these areas. Life expectancy is unfortunately short; hence the majority of its members are children.

To find out more and how you can help, visit http://www.pieldemariposa.es.

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