Rare disease
Silver Russel syndrome: the fight of a mother and ex-rector of Unige
Yves Flückiger and her niece Valérie, mother of a little boy hit by this genetic disease, mobilize to make her known and improve her care.
The first solidarity and sports challenge for children with Silver Russell syndrome took place on June 7 in Geneva: 9 km of happiness for some 800 francs collected.
Being president of Swiss Academies of Sciences and making the observation that a rare disease affecting your family will find it difficult to mobilize research is painful. This is what brought Yves Flückiger, rector of the University of Geneva (UNIGE) from 2015 to 2024, to mobilize its network in a post on the Internet, in order to raise awareness of Silver Russel syndrome, from which the young son of his niece suffers, Valérie.
“My niece had a child who today has a little more than 3 years whose frail constitution, the first delays in the acquisition of walking or language naturally worried him. She therefore quickly questioned medicine until the teachers detect, three months ago, a Silver Russel syndrome which reached the child from the embryo stage and which produces in particular growth delays. “
A collection during the Geneva triathlon
Since this syndrome was diagnosed for her son, Valérie hastened an immense task because this rare disease is not well known, even by pediatricians and not yet taken care of by the company. “An association is being created (Silver Russel Pag Switzerland) in order to raise awareness. This syndrome must be known, allow pediatricians to spot it earlier and get the growth hormone today prescribed at 4 years can be from 2 years, which makes consensus in the scientific environment. Finally, it would be necessary for disability insurance to benefit the patients, which is not the case today. ”
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From this June, this mother set himself the goal of multiplying sports challenges so that Silver Russel’s ailments are no longer ignored. Flocked on T-shirts of runners in early June, again on July 5, on the occasion of the Geneva triathlon, they motivate a Internet collection pour The French association Silver Russel Pag which has existed since 2010. This already provides support for families internationally. And the Trousseau hospital in Paris is the reference center for this disease.
“10% of the population is affected by a rare disease”
“In France, the Telethon makes it possible to finance this type of research on rare diseases. In Switzerland, we are counting on the Swiss Telethon Foundation To contribute to the development of research, ”underlines Yves Flückiger. “When you know that 10% of the population is affected by a rare disease, it is paradoxical that it is difficult to finance research. But this is explained by the fact that there are thousands of these rare diseases which affect only a tiny fraction of patients. The pharmaceutical industry therefore does not invest in the development of dedicated drugs. This is why it is essential to call on public funding, ”continues the former rector of Unige.
This problem had concerned him before his family was affected. “With Jean-Dominique Vassalli (Editor’s note: ex-rector of the university too), We said to ourselves what can we do? How to mobilize the scientific community on these subjects and accelerate the development of treatments that can benefit families? ”
Four years ago, when he was still a rector, a project called Accelerare was prepared by the UNIGE pharmacy section to precisely speed up the marketing of therapeutic treatments for these diseases. “I thought it was a lot. He has passed all the stages of scientific evaluation in order to benefit from research credits over twelve years until finishing among the last six projects in the running, says Yves Flückiger. Three was last instance by the SEFRI. We got another one, but not this one, and I regret it today. ”
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