EFA “Meet and Greet the European Union Institutions 2013” Training
This year’s “Meet and Greet the European Union Institutions” training combines basic and advanced training to participants. All members that are willing to participate should fill in the registration form by June, 10th 2013. We will confirm your participation by then as we only have 12 places available that will be allocated on the first came, first served basis taking into account the geographical balance to represent as much EFA members as possible (one representative per organisation). As you know, EFA will reimburse the accommodation and travel expenses.
The UK: Allergy awareness week in the UK
Allergy UK ran the Allergy Awareness week in April. This annual event aimed at drawing attention to the plight of the allergy sufferers. The organisation tried to make allergies visible to highlight the need for improved allergy services and raise money to fund all-important Allergy nurses. “We want to see the day when everyone in the UK with an allergy or intolerance receives the diagnosis and treatment they deserve. Our Nurses Appeal will begin to make that happen. We need to raise a minimum £1million so that, with your help and support, we can begin to make this significant difference,” the organisation explains. To get more information about the project, check this website.
Switzerland: Pollen and allergy Website/PollenApp
aha! Swiss Allergy Centre and MeteoSchweiz set up a joint venture to launch a website and smart phone applications that provide regional pollen measurements, the latest weather data and forecasts of pollen counts that enable hay fever sufferers to assess the situation accurately. Tips on prevention and more detailed information help to prevent symptoms.
The app features:
aha! Swiss Allergy Centre has, in collaboration with partners, further developed this application to provide an electronic symptoms diary. The features of the pollen app are completed by an interactive e-symptoms diary, which helps allergy and asthma sufferers to observe, quantify and document their symptoms easily. In a daily test run-through, the relevant symptoms are noted and any medication taken and lifestyle habits are recorded. In addition to the test questions, photographs of the skin can be documented, for example in the case of neurodermatitis (atopic dermatitis).
The data is accessible to sufferers in convenient graphical form. Before a consultation, a compilation of the symptom data can be sent to the treating physician at the touch of a button. This overview is supplemented by recorded data on pollen count, air pollution and rainfall to provide the doctor with additional information. The app supports diagnostics and communication between affected persons and their doctors.
France: EFA Members commemorate the 7th annual French Allergy Day
The association Asthme & Allergies arranged meetings for youths and their families starting on the 19th of March 2013 to provide an opportunity for them to educate themselves about and discuss allergies. This chronic disease, the most common among adolescents and youths, impacts their quality of life, performances in school as well as social and personal lifestyles. The 7th annual French Allergy Day was an occasion to give adolescents the tools they need to take control of their allergy, whether it is of the food, respiratory or skin contact variety. They were encouraged to be more autonomous and independent in daily management of their allergies for the future. The family members and school staff who interacted with allergic youths were also aware of the importance of supporting and empowering the youths in the care of their pathology. From the 19th of March through the 30th of June, “Allergie, j’agis!” or “Allergy, I act!,” was the platform for a national mobilisation effort targeting young people to diagnose their allergies earlier and treat themselves so as to move forwards without dragging their feet today and tomorrow.
On March 19, 2013, allergic youths could interact directly with allergists on www.allergiejagis.org, the first information site dedicated to allergy and through the social networks of Asthme & Allergies. In addition, from March through June, allergy kits with pedagogic information will be disseminated to organisations and places frequented by French adolescents and youths. Allergists and pharmacists will also provide brochures with similar information in their offices and in pharmacies. To close their actions, from June 28th – 30th the Association Asthme & Allergies, in collaboration with allergists, will have a stand for prevention and information within the health village at the Solidays Festival (Paris).
French Allergy Day is organised through an initiative of the Association Asthme & Allergies supported by the Stallergenes laboratory and in partnership with the French Association for the Promotion of Health and School (AFPSSU), the Association of School Parents and Educaters of Ile-de-France (EPE-IDF), Wire Health Youth (FSJ), the National Association for Continuing Education in Allergology (ANAFORCAL), the French Society of Allergology (SFA), the National Association of Allergists (SYFAL), the French Association for the Prevention of Allergies (AFPRAL), the National Aerobiological Monitoring Network (RNSA), the French Committee of Allergy Observation (CFOA) and with the sponsorship of the World Allergy Organisation (WAO).
France: International Website “Asthma Museum” to Be Ready for World Asthma Day
The association Respirlibre (association of patients speaking different languages) in partnership with FFAAIR launched an international website called the “Asthma Museum”. The website serves as a new, unique tool for patient education and a new means for the transformation of asthma’s public image.
The website includes the history of asthma science, inhaler development, interesting forms of patient education (Asthma carnival) and dialogues between fictional characters, M. Asthmidge and Dr. Building, who discuss different subjects of asthma management. There are also pages devoted to home ecology to foster asthma-friendly environments.
Although the website is presently available only in French and Russian, an English version will also be developed in the future. To learn more about the museum, visit this website
Spain: FENAER Commemorates World Allergy Week 2013 in Jaén
The President of the World Allergy Organisation (WAO) and the President of the Communications Counsel for the WAO, warmly welcomed the arrival of the interested parties to the World Allergy Week 2013. The theme of this year is: “Food Allergy, an increasing world health problem” and there are many ways in which member societies can participate to help promote awareness of allergic diseases at the local, regional and national levels.
The WAO calls on societies, associations and federations to collaborate in the global effort of the World Allergy Week highlighting the increasing global health problem of food allergy. This was done by providing information on the prevalence of allergy and explaining the need for better education and patient care services.
In complimenting this recommendation of the WAO, the National Federation of Respiratory Diseases Associations (FENAER) of Spain celebrated World Allergy Week 2013 in Jaén, being the Spanish province with the most people affected by allergy (28%), because they are affected by the combination of food allergy and allergy to olive tree pollen.
ALERJA, as a member of FENAER, was the organiser of this event in the province of Jaén as it is within the organisation’s scope. ALERJA organised events in the first week of April with a programme of activities from the 2nd - 6th of April according to the following calendar:
Tuesday April 2nd
Presentation of Multiple Chemicals Sensitivity (MCS) syndrome in Huelma (Jaén). Plenary sessions in the town hall of Huelma. At 17h30 the acting President of ALERJA and FENAER, Mª Victoria Palomares, presented her experiences as a patient affected by this disease.
Wednesday April 3rd
Conference about “Allergy in Jaén” by Dr. D. Manuel Alcántara, allergologist from the City of Jaén Hospital in cooperation with the President of ALERJA and FENAER.
Thursday April 4th
Information booth in the hall of the Diagnostics Centre informed all people interested in learning about allergy and in the activities of ALERJA to improve the quality of life for people living with allergy. The people interested to become part of ALERJA, or had any questions or doubts about their disease, could do so at the table. Informative brochures were distributed and people were greeted by members of ALERJA and allergologists from the City of Jaén Hospital.
Friday April 5th
Commemoration of World Allergy Week in Colegio Peñamefecit with allergic students from 5 different school districts. The students enjoyed a special day with the a performance of a volunteer group sponsored by ALERJA who were telling stories, globoflexia, face painting, games and dances. Guests in attendance included the education delegate, Dr. Alcántara and the President of ALERJA and FENAER.
Saturday April 6th
Training Day in sports and leisure for volunteers from the University of Jaén.
In the morning they developed the theoretical portion in which they took part with the acting President of ALERJA and FENAER, who presented both the association and federation, as well as two doctors specialising in the field of Allergology and Physical Education and Sports, an allergic patient and the relative of an allergic student.
In the afternoon the practical portion took place in which the volunteers were involved in workshops for sports and leisure with allergic children, directed by Professor Juan A. Párraga, Director and Coordinator of the Department of Physical Education.
The objective of this day is to recruit university volunteers to take part in sports and leisure activities during the recesses of allergic children in the time of pollenisation for olive trees in their respective schools. This would take place indoors because the students could not go outdoors with the rest of their classmates because of their allergic illness.
Ireland: Asthma Society welcomes UK’s NICE decision on Omalizumab
Asthma Society of Ireland has welcomed the decision by the National Institute for Clinical Excellence (NICE) in the UK to recommend a treatment for severe allergic asthma for both adults and children. The Asthma Society of Ireland, the national charity which provides services to thousands of people with asthma every year, is joining with leading respiratory experts in Ireland to call for equitable access to this treatment for those most in need in Ireland.
The UK drugs watchdog has made omalizumab (Xolair) accessible across the UK, concluding that it is a clinically effective and innovative therapy, and an effective use of NHS resources1.
Ireland has the fourth highest prevalence of asthma worldwide and 470,000 people in Ireland suffer with the condition2, meaning everyone in Ireland knows someone who has asthma. In Ireland today, 1 in 10 adults and 1 in 5 children under 14 suffer from asthma. Asthma cannot be cured, but it can be managed. Yet nearly 60% of Irish asthma sufferers do not have their asthma under control, and more than one person a week dies from asthma in Ireland.
The Asthma Society of Ireland is advocating for equitable access to health services for all asthma patients in 2013. Xolair was licensed for use in Ireland in 2005, but is not reimbursable under any government schemes. This means that access to the medication is extremely limited. Patients must rely on the generosity of hospital pharmacy budgets, meaning access to this life changing treatment is based on geographic location.
An estimated 450 people in Ireland are affected by severe allergic asthma and could potentially benefit from it. Xolair is a recognised treatment for severe allergic asthma in the international best practice GINA Guidelines and is widely available in many other EU countries.
In Ireland, only about 50% of patients with severe allergic asthma eligible for treatment are currently receiving Xolair3. The small group of patients with severe allergic asthma have uncontrolled symptoms, despite high doses of steroids and have high hospital admission rates, long lengths of stay and poor quality of life.Patients treated with long-term high-dose steroids are at high risk of developing serious co-morbidities such as diabetes and osteoporosis.
For more information, visit this website.