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The Respiralia Group calls for more support for CF research on World Cystic Fibrosis Day for the 30% of the collective without F508del.
On the occasion of World Cystic Fibrosis Day, which is commemorated on September 8, the Respiralia Group and the Spanish Cystic Fibrosis Foundation (FuEFQ), formed by the Spanish Federation of Cystic Fibrosis (FEFQ) and the Spanish Society of CF (SEFQ), call for more support for research to achieve effective life-saving treatments, and ultimately a cure, for all people living with this disease, especially the 30% of the group that does not have the F508del mutation.
Revolution with new CFTR protein modulators
Cystic Fibrosis (CF) has undergone a revolution in recent years in terms of treatment. The development of CFTR protein modulators, and their extension to more and more mutations and age groups, is leading to a considerable improvement in the quality of life of many people with CF. These treatments do not cure, but they slow down the deterioration caused by the disease.
Disadvantages of not having the F508del mutation
However, there is still 30% of the population with Cystic Fibrosis in our country that cannot benefit from any of these modulatory treatments, either because of their mutations or other circumstances related to their disease. Therefore, the Respiralia Group, formed by the Cystic Fibrosis Balearic Association and the Respiralia Foundation, calls for the development of strategic actions and the allocation of the necessary resources to ensure the progress of research in this field, as well as in personalized medicine, which is giving such good results in Cystic Fibrosis.
Our commitment to this part of the group
“The arrival of modulatory treatments in our country in recent years has considerably improved the quality of life of many people with Cystic Fibrosis. But, although the advances have been very important, we must continue supporting the search for treatments for all the population with Cystic Fibrosis and, above all, that once they are available their access is fast”, comments Ana Mª Amate, president of the Cystic Fibrosis Balearic Association.
Other open lines of research
There are currently several lines of research open in search of an effective treatment for minority CF mutations. This also requires greater agility in the approval processes for future drugs, so that all people with Cystic Fibrosis who are still awaiting the appearance of a vital treatment do not suffer unnecessary delays that could affect their health and survival.
The Respiralia Group’s research support
On her part, Mrs. Teresa Llull, president of the Respiralia Foundation points out that, with the appearance of CFTR modulators in recent years, new challenges for Cystic Fibrosis are presented:
“Undoubtedly, the most important challenge is to find a treatment for all people with the disease and, eventually, a curative treatment. In the meantime, we must also ensure adequate treatment of the sequelae produced by the disease. People with CF who cannot benefit from modulators are right now the priority of CF research groups around the world and we are sure that gene therapy trials will be an important target in the coming years.
Throughout this year, the Respiralia Foundation has supported research in phage therapy with the creation of the company Evolving Therapeutics, together with the University of Valencia and the researchers Pilar Domingo Calap and Maria Luisa Domingo Calap, to take a step beyond basic research, and the stem cell research project of the company Stem Cell Lab and the Associació de Pneumòlegs de Mallorca”.
#TogetheragainstCF #WorldCysticFibrosisDay
