News

Patient organisation round-up: November 2020

Last Update 06/04/2021

Patient organisations around the world have been taking part in global campaigns and sporting activities to raise awareness of lung conditions. Others have been launching projects and conducting research to provide further support for people affected by lung conditions.

Foundation for Sarcoidosis Research announces first CEO and final Virtual Summit

The Foundation for Sarcoidosis Research (FSR) has announced Mary McGowan as the organisation’s first-ever Chief Executive Officer. Find out more: www.stopsarcoidosis.org/fsr-announces-new-ceo/

FSR’s second and final Virtual Summit of the year will be taking place on 14 November at 8:00-17:00 CT. Their first event, which took place in September, was a huge success with over 200 attendees and an average rating of 4.2 out of 5 stars.

Alfa-1 España publishes ‘Soy Alfa’

Alpha-1 Spain has published Soy Alfa (I am Alpha), a small-format book that seeks to educate young people with Alpha-1 Antitrypsin Deficiency about the importance of leading a healthy life.

Find out more.

Respiralia organises sporting event and plants trees in Mallorca

A volunteer from the Respiralia Foundation, Javier Gutiérrez, organised an event: Vuelta a Mallorca caminando (Walking around Mallorca), which consists of walking around Mallorca every Saturday and Sunday to increase awareness of Cystic Fibrosis and to generate donations for the Foundation. Find out more.

The Respiralia Foundation has also been involved in a project to plant trees in an area of Mallorca to improve the air quality for everyone, but especially for people with cystic fibrosis. Find out more.

NEUMOAI joins FENAER and organises World Pneumonia Day conference

This month, the Association for Information and Support to Patients and Families with Pneumonia (NEUMOAI) became a member of the Federación Nacional de Asociaciones de Enfermedades Respiratorias (FENAER). As the flu season approaches, the two organisations sent a letter to all healthcare workers in Spain to remind them of the importance of the flu vaccination among healthcare workers. Read the letter.

NEUMOAI has also organised a Global Conference for World Pneumonia Day on 12 November, which will be available to watch live here.

Global Allergy & Airways Patient Platform launches Define Your Asthma guide and holds weekly webinars

On World Lung Day, which took place on 25 September, the Global Allergy & Airways Patient Platform (GAAPP) launched its new Define Your Asthma guide. The guide was based on the results from a global survey of people living with severe asthma. The survey brought together the thoughts, experiences, tips and tricks about living with severe asthma. Download the guide: https://gaapp.org/support-and-advice-for-asthma/   

GAAPP has been hosting weekly capacity building webinars since September and will continue to do so until 9 December every Thursday at 10:00 EST. The webinar content is offered in English and Spanish. Recordings of all past webinars can be watched on GAAPP’s website: https://gaapp.org/weekly-capacity-building-webinars/  

Lovexair organises works to improve digital health

In collaboration with GAAPP, Lovexair Foundation are organising a three-day programme for patients and healthcare professionals, where they support capacity building for patient advocacy and support in the digital era. Despite the challenges of COVID-19, they aim to strengthen their networks and support each other in accessing resources, sharing good practice, and working towards the future digitised health and social care environment everyone needs.

Lovexair recently established a group called Improvid. Improvid aims is to bring together clinical expertise in lung science, integral care and rehabilitation, and carry out research to build care pathways and digital resources which meet the needs of people affected by COVID-19 or are at high risk. The partnership stretches across four European countries with leading experts and is attracting growing interest from many stakeholders. They are researching new digital therapies, such as virtual reality, to help people manage their care programmes safely, better connect with their healthcare teams, and improve their quality of life. They are aiming to participate in a Horizon 2021 call and work on an innovative investment strategy between public-private sector. For more information, contact presidencia@lovexair.com.

Respiriamo Insieme launches digital community for asthma patients

Respiriamo Insieme has launched a digital community where people can learn more about asthma, severe asthma and allergies, and better manage their condition. Healthcare professionals, researchers and psychologists can help people and answer questions within the community.

Lung Foundation Australia collects results from patient experience survey

In February 2020, Lung Foundation Australia (LFA) commissioned research to learn more about the experiences of people living with lung conditions, and their families and carers. The aim of the research was to help LFA to understand patients’ needs, so LFA and healthcare teams can work together to provide the best services and resources to help Australians with lung conditions live their best lives. The project involved 977 participants between 0-80 years old and included people who has been recently diagnosed as well as those who had been living with a lung condition for over 20 years.

To find out more about the outcomes of the research, sign up to LFA’s newsletter.

Pulmonary fibrosis news

Pulmonary Fibrosis Foundation celebrates PF Awareness Month success

The Pulmonary Fibrosis Foundation deeply appreciates the time, hard work, and passion that the pulmonary fibrosis (PF) community from around the world put into making September an incredible Pulmonary Fibrosis Awareness Month, despite the difficulties faced during these times.

During the awareness month:

  • 48 buildings and landmarks shined blue as a part of the #BlueUp4PF lighting campaign;
  • creative #BlueUp4PF selfies raised awareness online;
  • daily facts and stories were shared on social media;
  • media outlets nationwide covered stories about remarkable people in the PF community; and
  • PF Awareness Month messaging was displayed on social media more than 1.6 million times and reached over 1.2 million people!

Action for Pulmonary Fibrosis reports record support for PF Month and IPF Week

During September 2020, when patients and their families were shielding, Action for Pulmonary Fibrosis (APF) wanted to empower families affected by pulmonary fibrosis (PF) by achieving three things:

1. Raise awareness of pulmonary fibrosis.

2. Campaign to improve equal access to anti-fibrotic drugs.

3. Raise funds for the charity so they can support more people affected by the disease.

With the support of DJ Janice Long, whose brother Keith Chegwin died of idiopathic pulmonary fibrosis (IPF); APF is pleased to report that they reached over 2 million people via press and radio, letting people know about the condition. Over 200 letters were written to Members of Parliament across the UK about the limited access of anti-fibrotic drugs. Over £24,000 was raised for APF to help more people access support over the coming months.

Pulmonary hypetension news

PHA Europe releases results from COVID-19 and publishes Mariposa Journal

Earlier this year, Pulmonary Hypertension Association Europe (PHA Europe) launched two surveys. One of the surveys was disseminated within the expert centres and provided useful insight into the effects of COVID-19 on PH patients. The results of this survey have been published and you can access them here: COVID-PH Survey Report.

The other COVID-19 survey, which was accessed by the patients directly, will hopefully be published soon.

The summer edition of PHA Europe’s journal, Mariposa, has been published. In this edition you can learn more how their member associations celebrated World Pulmonary Hypertension Day on 5 May 2020.

PH and Scleroderma Patient Association holds Instgram talks to support patients

Pulmoner Hipertansiyon ve Skleroderma Hasta Derneği (PAHSSc) has been holding Instagram talks, which this month included doctors and patients discussing: Living with Eisenmenger Syndrome, pulmonary arterial hypertension (PAH) and COVID-19, PAH and lung transplant, back to school information session for children with PAH, Scar treatment in scleroderma, Raynaud awareness, and Juvenile Scleroderma. They also had a series of announcements for invisible disabilities to raise awareness.

They are promoting an important congress by the Turkish Thoracic Society: Lung Diseases and COVID-19, backed by many healthcare professionals and celebrities.

PAHSSc has also been active in preparing and carrying out a survey about COVID-19 and the problems patients face in state and university hospitals. They are trying to work on a solution for the availability of influenza vaccines for their patients as they are in the high-risk group.

Find out more.

PHA “Moment Plus” Macedonia members take part in marathon

Members of APH Moment Plus took part in the Wizz Air Skopje Marathon to raise money and awareness for pulmonary hypertension (PH). One member named Gjurgica was honoured with a medal after her battle to get medical approval for the marathon.

Bulgarian society of the patients with PH

The Bulgarian society of the patients with PH (BSPPH) and the Association of Patients with Respiratory Failure and Lung Transplantation launched a project to commemorate organ donors. 202 roses were planted in the garden next to the National Palace of Culture in Sofia, Bulgaria,  to show gratitude to the people who donated organs to save other lives. The project was supported by the Ministry of Health and the Medical Supervision Executive Agency. Natalia Maeva, president of BSPPH had the privilege of planting one of the roses. She stated: “I am living a second and a better life. All thanks to my donor, whom I know nothing about, but thanks to him I am here! One ‘yes’ can save up to 8 lives”.

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