Patient organisation round-up: March 2020

Image: Respiriamo Insieme launching the ‘# Ho l’asma e faccio sport’ (‘#I have asthma and I do sport’) campaign at the Ministry of Health in Rome

Respiriamo Insieme

The Italian Respiriamo Insieme association launched a campaign at the Ministry of Health in Rome. The campaign is called ‘# Ho l’asma e faccio sport’ (‘#I have asthma and I do sport’). It aims to interact with the institutions (political, sports, education and entertainment) and with asthmatic people to promote physical activity for the better management of asthma. Respiriamo Insieme created this project after children and teenagers with asthma told them that they had given up on taking part in sports activities because their peers made jokes about their physical performance. The organisation hopes to tackle discrimination and bullying and help young people with asthma feel more included in sport.

NEUMOAI

The president of the Association for Information and Support to Patients and Families with Pneumonia (NEUMOAI) attended the first ever Global Forum of Childhood Pneumonia that took place in Barcelona. Attendees included:

• 10 health ministers from the continents most affected by childhood pneumonia (Africa and Asia);
• 9 leading health and children’s organisations; and
• the scientific community with the purpose of fighting against pneumonia.

The president of NEUMOAI was also involved in a recent publication on pneumonia.

A.Mare

Dr. Romeo Poli, Chair of the Italian association of patients with chronic respiratory diseases (A.Mare), was invited to a speech about severe asthma during the Regional congress of FADOI (association of internal medicine specialists). It was held in Cremona in November and was chaired by the founder, Prof. Maurizio Marvisi.

Breathe Easy Support Groups, Asthma UK and British Lung Foundation partnership

The Chair of the Breathe Easy London support group has been advocating for the MYCOPD app to be introduced in the area for free. The idea is to make the app available when it is referred by a clinician, instead of the usual £39.99 fee.

A local central London app called My Health Help Now is also being launched as a signposting facility covering 12 regions. It is linked to Google maps, auto phone call and comprehensive local support information.

PAHSSC

The Pulmonary Hypertension and Scleroderma Patient Association (PAHSSc) has been involved in several activities over the past month.

• They held their regular informal patient meetings in three cities.
• They were invited to attend a full-day symposium along with leading doctors in the field. The meeting was very informative, and it updated members on the latest trends across the world.
• They started a collaboration with a university in which their scleroderma patients were supplied with custom-made gadgets to make their lives easier when holding or grasping objects.
• They presented a painting named ‘There is hope as long as you breathe’ to various hospital departments that take care of patients in the organisation. It expresses sympathy to newly diagnosed patients and shows that they are not alone and have support.

Alpha-1 Global

Alpha-1 Global has officially appointed the Alpha-1 Global Hub Centers which will serve as resource centres for less established alpha-1 patient organisations. Three organisations were selected.

• Alpha-1 Association of Australia
• Alpha-1 Foundation Ireland
• Fundación Argentina de Alfa-1

These Hub Centers will serve as global resource centers to other Alpha-1 patient organisations, providing mentorship, guidance and support. For more on the Hub Center program, please read here.

Alpha-1 Global is organizing the third annual Roundtable event in European Parliament, which will lead up to the European Alpha-1 Awareness Day on 25 April 2020. The final details of this event will be announced soon.

Aspergillosis Trust

The Aspergillosis Trust (AT) organised a talk titled ‘Spotlight on aspergillosis’ on 3 February. This was in collaboration with Medics 4 Rare Diseases and medical students at the Barts and the London (BL) Immunology and Infectious Diseases Society. Dr. Darius Armstrong-James, consultant in infectious diseases and medical mycology at Brompton hospital, conducted a clinical style interview. This was with Fran, a member of AT who has aspergillosis. It was livestreamed via Facebook.

Watch the clinical presentation and clinical interview.

For World Aspergillosis Day on 27 February 2020, AT created a world map poster showing where there are people with aspergillosis around the world. It aims to help newly diagnosed people see that they are not alone. AT have been emailing Clinical Commissioning Groups (CCGs) and medical, pharmacy, nursing and physiotherapy schools in the UK to ask them to display the poster along with an aspergillosis patient information leaflet.

MATIO Polish Cystic Fibrosis Foundation

The MATIO Polish Cystic Fibrosis Foundation took part in various activities during the 19^th National Cystic Fibrosis Week at the end of February. Some of the activities included:

• educational sessions called “Cystic fibrosis – what do you know about the disease?” in 180 schools and nurseries across Poland;
• free genetic tests;
• launch of a 24-hour helpline; and
• individual consultations on the physiotherapy.