Patient organisation round-up: achievements in 2020 and plans for 2021
This month we asked patient organisations to share their achievements from 2020 and their goals for 2021 as well as their latest news.
NEUMOAI recognises success of World Pneumonia Day
Asociación de Apoyo e Información a Familiares y Pacientes con Neumonía (NEUMOAI) accomplished their goals they had set for 2020.
- They launched the Worldwide Pneumonia Awareness Campaign 2020-2024. The campaign is called #Pneumolight and used the slogan “Pneumonia Affects Everyone”. The campaign illuminated 252 iconic landmarks from 52 countries worldwide in blue on World Pneumonia Day. The photos can be found here: www.flickr.com/gp/190586116@N04/VMK08F
- They organised the Global Conference for World Pneumonia Day 2020. This conference aimed to understand why pneumonia is considered a neglected disease and how we can solve this problem. Representatives of the main organisations that fight against pneumonia (WHO, Save the Children, Unicef, GAVI) and Presidents of the main scientific societies of respiratory, critics, infectious diseases, primary care and internal medicine, expressed their point of view on this disease (ELF, FIRS, ERS, ATS, SEMERGEN, SEMICYUC, PATS). Watch the conference recording here: https://youtu.be/xjCumtkV1Es
NEUMOAI is planning a new impact campaign for World Pneumonia Day 2021 with the aim of giving visibility to pneumonia.
Respiralia Foundation succeeds in new adaptions of annual events in 2020
Due to the COVID-19 pandemic, in 2020 Fundació Respiralia has not been able to carry out two of their famous annual projects:
However, they managed to carry out other solidarity events which were very successful, such as the first Walking Tour around Mallorca for Cystic Fibrosis, Serra4Life, and donations from the book "Somiant".
In 2021, the Foundation wishes for good health. Even if the coronavirus goes away, cystic fibrosis (CF) will still exist, so they will continue working to improve the quality of life of people with CF, offering care from their professionals, and pushing the government to authorise and finance Trikafta/Kaftrio, a drug to treat CF, in Spain. https://cutt.ly/ijaXSxV
Action for Pulmonary Fibrosis supports people affected by pulmonary fibrosis during national lockdowns
Action for Pulmonary Fibrosis (APF) is needed more than ever as the United Kingdom is in a third national lockdown and people with pulmonary fibrosis (PF) continue to shield. The APF team is committed to supporting anyone affected by PF through these uncertain times. The organisation has adapted their services quickly during the pandemic. During 2020 they worked hard to connect support groups digitally so they can access peer support and feel connected. This work continues to help reduce isolation and keep patients and families informed. Unsurprisingly, calls and emails to their support line increased significantly last year and they plan to continue to grow this service to meet the demand. Funding vital research is a key area of work for APF. They will be spearheading their new research appeal this year alongside their research strategy. Finding a cure for PF drives their patients, their families, and fundraisers.
Respiriamo Insieme launches a new awareness campaign for asthma and severe asthma
Respiriamo Insieme has recently launched a new information awareness campaign: 'Severe Asthma. Knowing the Difference Makes the Difference'. This campaign aims to raise awareness on a condition that is different from asthma, more severe, and that affects 5-10% of all people with asthma.
The outcomes they want to achieve are to:
- be able to tell the difference between asthma and severe asthma,
- understand the seriousness and persistence of the symptoms,
- raise understanding of the implications and consequences of severe asthma,
- improve diagnosis and treatment.
So far, this campaign has been well received among patients, who have sent more than 500 emails requesting help and support to the association's email address. More than 1,600 people have joined Respiriamo Insieme's Facebook page in a month. The video campaign has reached 2 million viewers, and the social media campaign has reached 6 million people, creating 8500 interactions.
Respiriamo Insieme recently made a video, with English subtitles, on the topic. You can download it here: Video Campagna Asma Grave ENG v3.mp4 - Google Drive
Lovexair protects vulnerable people during the COVID-19 pandemic
During 2020, Fundación Lovexair has been at the core of the fight against the pandemic providing meaningful resources to people in e-health and providing workshops with more than 480 participants from 13 Spanish-speaking countries, recently extending their outreach to Portugal and Brazil. All to help respiratory patients tackle their concerns and care management issues for COVID-19 where physical and emotional needs must now be met in alternative ways (#RespiraLATAM & #CercaDeTi).
Lovexair is also engaged in several international projects with a growing network of IT and multi-partner stakeholders, such as their asthma virtual assistant #Altys (http://happyair.org/altys/) which includes clinical and scientific expertise, startup devices and industry leadership, recently re-launched for their international European project #Improvid (http://happyair.org/improvid/).
Alpha1 Germany celebrates 20-year anniversary
2021 will be a special year for Alpha1 Deutschland e.V. The organisation was founded exactly 20 years ago and has grown steadily since then. It has grown not only in members but also in knowledge and influence. It currently has over 850 members in Germany (a lot for a rare disease organisation) and has already been able to help many people with Alpha1 deficiency. They want to celebrate this in the autumn and hope that life can go back to normal again following the COVID-19 pandemic.
Alpha-1 Sweden pushes for access to infusion treatment in Sweden and plans conference for 2021
Alfa1 Sverige has not been able to carry out many of the activities they had hoped to due to the COVID-19 pandemic. However, some of their achievements included:
- an exciting lecture with Hanna Tanash, Consultant of lung and allergies medicine who talked about Alpha-1 antitrypsin deficiency (AATD) and what you need to know when you are diagnosed; and
- the creation of a medical group in Sweden that is working to give people with AATD in Sweden access to Infusion treatment.
If the situation with the pandemic permits, in 2021 Alfa1 Sweden plans to hold a conference with a variety of speakers, and also hold an Alpha Kids and Parents meeting which will include going to an amusement park.
PHA Europe involved with new ERS paper on CTEPH
The European Pulmonary Hypertension Association (PHA Europe) was involved with the new European Respiratory Society (ERS) statement on chronic thromboembolic pulmonary hypertension (CTEPH), which has now been published online in the European Respiratory Journal (ERJ) as an early view. The paper aims to summarise the most recent developments in the field of CTEPH. PHA Europe was invited to represent the patient perspective and contribute to the paper as a co-author. Read the statement.
The Slovenian PH association, Društvo za pljučno hipertenzijo Slovenije, in cooperation with PHA Europe ran an informative COVID-19 awareness campaign in November. Many PH patients and carers were interviewed and had the opportunity to share their thoughts and feelings about the pandemic. The common message was the importance of following the security measures, taking care of each other and wearing masks to help save lives. Read quotes and watch videos from the campaign.
You can follow the social media platforms and use the following hashtags in your search field: #COVIDawareness #youngpatient #Raredisease #phPatient
PHURDA Ukraine offers gifts to children with pulmonary hypertension on St. Nicholas Day
PHURDA Ukraine held activities to collect and present gifts to children with pulmonary hypertension (PH), children of PH patients, and children whose parents died from PH, on St. Nicholas Day (19 December). Traditionally in Ukraine on this day, children get presents from St. Nicholas.
PHA Europe’s project “O2Kids” held a fundraising campaign to buy electric scooters with portable oxygen concentrators for children. As part of the project, Khrystynka Makarchuk, a child with PH, and the face of "O2Kids" in Ukraine, received an electric scooter. Also for St. Nicholas Day, as part of this project and with the support of Sister Dalila and "The First Western" TV channel, PHURDA Ukraine presented electric scooters to two more children with PH. This moment was full of emotions and happiness for the children.
PHURDA’s biggest achievements in 2020:
- Launch and implementation of the Educational and Social Project "Club-type Beauty Salon: Butterfly in Blue", aimed at free and safe access to beauty services for PH patients and beauty care training.
- The creation of a movement of patients with rare diseases "The Orphan Bell" was initiated. The movement united patients with PH, tuberous sclerosis, mucopolysaccharidosis, Gaucher disease, CMA, cdkl5 in order to improve the situation of patients with rare diseases in Ukraine.
- A round table "The Day of Orphan Diseases" was held in Lviv Regional State Administration with the participation of patients with rare diseases, their representatives, the Ambassador of Orphan Patients, officials, doctors, politicians of various levels, and media representatives. A roadmap for further actions of the orphan community in the region and in Ukraine to improve the situation of orphan patients has been developed.
PHURDA’s plans for this year:
- Uninterrupted supply of medicines to patients with PH in Ukraine
- Rehabilitation of PH patients (physical and psychological) in Ukraine
- Development of organ transplantation in Ukraine
- Implementation of the educational and social project "Club-type Beauty Salon: Butterfly in Blue"
PAHSSc continues to grow activities to support and inform patients
Pulmoner Hipertansiyon ve Skleroderma Hasta Derneği (PAHSSc) achieved a lot towards the end of last year. They were involved in several activities including:
- creating a poster showing a patient with invisible disabilities to highlight that not every condition is visible,
- launching exercise videos for cardiovascular rehabilitation for PH patients,
- interviewing a patient who recently had a lung transplant and who is waiting for another donation for a second operation,
- a talk on living with pulmonary arterial hypertension (PAH) during the COVID-19 pandemic,
- a talk by the president in an informative discussion on illness administration and management for PAH and Scleroderma during the pandemic.
For more PAHSSc news, visit www.pahssc.org.tr/faaliyet-raporu/16/faaliyet-raporu-2020
GAAPP launches COPD Patient Charter
In 2020, the Global Allergy & Airways Patient Platform (GAAPP) in collaboration with AstraZeneca launched the COPD Patient Charter, a document outlining six key principles of quality care that patients deserve to receive.
Watch our webinar on COPD patients’ rights with panelists Dr. John Hurst/UK, Dr. Mohit Bhutani/CA and Tonya Winders/USA.
GAAPP President Tonya Winders also co-authored the publication: A worldwide charter for all children with asthma, a roadmap to better education and training with the goal of reducing the global health burden of childhood asthma. Read and download the publication.
Helping Hands Foundation
Last year the Helping Hands Foundation carried out activities for various awareness days, including World Disability Day and World Children Day to provide information and support. The Foundation was awarded a certificate from the Governor of Punjab for their efforts to encourage the community to follow government guidelines to help stop the spread of COVID-19.
The Helping Hands Foundation is planning activities for even more awareness days in 2021, including World Environment Day, World Lung Day and World Pneumonia Day, where they will carry out various activities to raise public awareness of these topics.