The Respiralia Foundation and the Cystic Fibrosis Association of the Balearics offer different services within projects that are presented to different public institutions and private entities for funding. Both entities are currently working together to provide comprehensive care to children and young people with Cystic Fibrosis with the following activities:
Welcome, orientation and monitoring program of people with Cystic Fibrosis and relatives
It is about making a first intervention with families who have been diagnosed with a child with CF, in which information is given accordingly to this stage of the disease, they are presented to other families who have gone through the same trance and we offer them the possibility of associating so that they can benefit from the rest of services.
Once they have become partners and signed the contract for the provision of services (required by the regional authorities), they can take advantage of the experience and knowledge of our team of professionals, including that of our psychologist, which in many cases is usually advisable at this time.
The program also includes hospital support and bureaucratic issues, for which we have a specialist lawyer in these areas. In addition, we have two apartments fully equipped to welcome families who live outside of Palma and have children staying at hospital.
Education equals Health in Cystic Fibrosis
Cysctic Fibrosis is a disease that requires physiotherapeutic treatments and daily medication, taking in addition to comprehensive hygiene measures. We are aware that if the different techniques are not applied correctly they are not productive, and may even be counterproductive.
For all this, this program aims to train children and young people with Cystic Fibrosis, their families and our professionals so that the effectiveness of the applied techniques and hygiene and nebulization protocols are as high as possible when applied at home without the supervision of the professional. We want our users to become as autonomous as possible in the management of their disease treatment.
In addition, the teaching of Cystic Fibrosis to the youngest is an important point. We carry out interventions according to the age of the students of the educational centers that request this activity.
Thanks to the Barcelo Foundation, promoter of this project since July 2016, both the professionals in the specific training courses and the children and young people with Cystic Fibrosis and their families receive the necessary knowledge to reach excellence in the services offered, such as it is foreseen in the definition of the values of the Respiralia Foundation and the Cystic Fibrosis Association of the Balearics.
In addition to the Barcelo Foundation, the rest of the sponsors are ONCE Foundation, Banco Santander Foundation, Guillem Cifre de Colonya Foundation, Bankia “En acción”, Linde Healthcare, Vertex Pharmaceuticals, Eroski, Vitalaire, Escuela de Osteopatía de Madrid, Physiomaster, Consell de Mallorca, IMAS, Consell Insular de Menorca and Consejería de Servicios Sociales y Cooperación del Govern Balear.
The activities carried out in this program are:
- Autogenic Drainage formation sessions
- Endurance training sessions
- Specific ostheopatic techniques aplication and postural hygiene formation sessions
- Organization of Autogenic Drainage courses for physiotherapists
- Organization of the Autogenic Drainage, hygiene measures and nebulization protocols workshop for children and young people with Cystic Fibrosis and relatives to update knowledge
- Edition of manuals such as Inhaled treatment and hygienic measures or nutrition
- Storytelling on Cystic Fibrosis with the “Respiralio and the great Blue Bear” tale for children from 6 to 9 years. They can be students of educational centers and children of employees of companies
- Talks about the respiratory and circulatory system and its relationship with Cystic Fibrosis for children 10 to 14 years old
- Talks about genetics and their relationship with Cystic Fibrosis for youngsters between the ages of 15 and 17 who are studying for a bachelor’s degree in science
In 2018, 9 physiotherapists trained in Autogenous Drainage, 2 Osteopaths and 2 graduates in Physical Activity and Sports Sciences, as well as a liaison with families and administrative staff, work with us.
Productive Holiday in Mallorca program
It is an activity for people with Cystic Fibrosis and relatives who live outside the Balearic Islands. During a stay of 4 to 10 days they are trained in the technique of autogenous drainage, inhaled therapy and hygienic measures, besides being able to be evaluated by our osteopath and by our physical trainers. You can find detailed information at this link.
All the years, the Cystic Fibrosis European Association organizes the 2nd European Awareness Week of Cystic Fibrosis to improve the quality of life and the life expectancy of people with this illness.
With this Awareness Week, the European CF Association and the associations from 38 european countries, including the CF Balearic Association and the Respiralia Foundation, want to make more people aware of this illness and make possible that all people with CF can receive the treatment they need.
Toward equality of access to the appropiate care for people with Cystic Fibrosis in Europe
Precocious diagnosis and treatment, and an appropiate higiene and follow up can prolong and save lifes, as well as avoid some health expenses in the future. Therfore, we demand to the european and national authorities at this 2nd European Awareness week of CF to make their best to allow an equal access to the proper health care services, as it is established at the European Consens about the CF Treatment Rules.
The Respiralia Foundation and the Cystic Fibrosis Association of the Balearics have own publications to spread the knowledge of Cystic Fibrosis and to inform about the activities we carry out.
You can find the following publications: