News from EFA’s members this month includes worrying details of legislative changes in Belgium which could negatively impact EFA’s members in the country and an update from EFA’s members working on national allergy and asthma programmes in their countries.
Prévention des Allergies: Meeting with EFA in Brussels highlights concerning changes for the representation of Belgian patients with allergy, asthma and COPD
On March 13th, Suzanne Van Rokeghem, a representative from EFA’s Belgian member, Prévention des Allergies, visited the EFA Secretariat in Brussels to discuss arising concerns with recent changes in Belgian law which could affect patient associations as well as upcoming activities of mutual interest.
In the past, health prevention activities in Belgian civil society organisations were linked to language and commune in Belgium, but recent legislative changes are now changing this to become a competency of the region. As a result, the conditions of the government subsidies to the Belgian members Prévention des Allergies and FARES, whom share a common Secretariat in Brussels, will change considerably within the next year. The regional government of Brussels has already indicated to FARES that they will only be allowed to work on issues related tuberculosis and tobacco.
The result of such a change could be detrimental to Prévention des Allergies, as FARES would no longer be permitted to work on asthma or COPD, thereby leaving the French-speaking region of Belgium (Wallonie) without a patient association representing patients with these diseases. In addition, the two organisations would be required to cease collaborations and as of December Prévention des Allergies could be required to leave their shared Secretariat and find a different venue. During the meeting, EFA formally offered a temporary seat for Prévention des Allergies in its office should they be unable to find a permanent solution before this time.
Meanwhile, the Scientific Committee of Prévention des Allergies has advised the organisation to write an official letter of complaint to the regional government of Brussels. The primary purpose of the letter would be to express concern for the regional government’s decision and discuss the consequences of the decision which may endanger the representation of allergy, asthma and COPD patients in Wallonie. A press conference is to take place on Tuesday April 22nd with a Flemish counterpart (AllergieNEt) to present the new website created together on schools for allergic children.
Swedish Asthma and Allergy Association launches new ‘Family Support Program’
During 2014, the Swedish Asthma and Allergy Association has launched a new Family Support Program to offer support to families with allergic or asthmatic children. The project consists of two main parts; Parental support groups and Family weekends.
The Parental support groups are local forums where parents to children with asthma, allergies or hypersensitivity can meet and exchange knowledge and support. So far approximately 15 to 20 local groups have been started by parents with support from the Association.
The Family weekends will offer families with children or teenagers that have severe allergies a weekend at the Associations member facility just outside of Åre. During their stay, the families will be guided by a team consisting of pedagogic and medical professionals. The first weekend is planned to take place in September 2014.
The Family Support Program will run over three years with the overall ambition that both parts will be incorporated in the Associations regular activities.
EFA Allergy Project: Updates on the Norwegian and Bulgarian National Allergy Programmes
The Norwegian Asthma and Allergy Federation’s (NAAF) work on implementing a 10-year asthma and allergy programme in Norway. NAAF currently waits for the Ministry of Health’s official approval to launch the programme this summer. When the programme is launched, each of the four ‘health regions’ in Norway will have its own Allergy and Asthma Center, all with financing through the individual health regions’ budgets. The Centers will serve as ‘the third pillar’ of healthcare for allergy and asthma in addition to general practitioners and specialists, and are modelled after the best practice example of Finland, with different specialists providing their services at each Center. EFA further appreciates the close cooperation between the Norwegian Directorate of Health and Prof. Tari Haahtela, from Finland, as his knowledge and experience continues to be of great value to the Norwegian Programme.
Meanwhile, in Bulgaria, the Ministry of Health has established a working group on the development of a National Programme for asthma, allergic rhinitis and COPD, chaired by Prof. Dr. Vasil Dimitrov, head of Allergology Clinic “Alexandrovska” and chair of the Bulgarian Allergology Association. A draft proposal of the programme, as well as its financial framework, are both currently waiting for approval by the Minister of Health, Dr. Tanya Andreeva.
In Austria, EFA’s member Österreichisscher Lungenunion works tirelessly to repeat last year’s success of its ‘Allergy Check’ project in Vienna – but on the national scale! The project picks up where it left off just in time for the Austrian allergy season and will hope to build upon its momentum from last year. The lead of this initiative in Austria, Otto Spranger, has been invited to present an oral abstract at the European Academy for Allergology and Clinical Immunology’s (EAACI) annual Congress in June of this year – so be sure to join him if you are in Copenhagen for the congress so you can join to hear more! In Italy, EFA’s member FEDERASMA has confirmed it will build upon the experience of Vienna and run an ‘Allergy Check’ project in Genoa this spring. EFA wishes them best of luck and will be very excited to see the results from their efforts.