Patient Organisation Round-up: January 2022

FairLife LCC celebrates one year of action and shares biggest achievements to date

FairLife Lung Cancer Care (FairLife LCC) was founded in November 2020 by Korina Pateli-Bell after losing her husband to lung cancer. It is the first non-profit organisation in Greece exclusively dedicated to lung cancer. It works to support patients and raise public awareness of the causes of lung cancer.

Some of FairLife’s achievements in their first year of operation included the following:

• Korina Pateli-Bell was elected Treasurer, as a Member of the Lung Cancer Europe Board of Directors.
• FairLife created a section on their website called LEARN-ACT-HOPE – a digital library enriched with videos, interviews and talks, aiming to become a reference point for anyone who wants to get information about lung cancer
• Distinguished mountaineers became brand ambassadors to convey the message of prevention and to support the FairLife 11157 lung cancer information and support line.
• FairLife reached out to teenagers in schools to educate them about the harmful effects of smoking. Orestis-Fotis Mikelakis, the youngest brand ambassador of the organisation, shared his ideas and assisted in implementing anti-smoking campaigns.
• On the anniversary of its foundation, FairLife held a conference, open to the public, with the participation of distinguished speakers from Greece and abroad as well as representatives of the State, the scientific community, the pharmaceutical industry, patient organisations and ELF. It was entitled: “Lung Cancer – prevention and early diagnosis: Lung Cancer Screening Programme in Greece, are we ready?”

Watch FairLife LCC’s ‘Year in Review’ video: https://www.youtube.com/watch?v=asnZoVVf6Ik

Alpha-1 Deutschland looks at recent achievements after 20 years in development and shares main goal for 2022

In 2021, Alpha-1 Deutschland (Alpha-1 Germany) saw an impressive increase in visitors to their website – approximately 880% in 5 years. Thanks to good content, the website is prominently displayed by Google. They have also expanded the Alpha1 newsletter and YouTube channel, increasing the number of subscribers. Their YouTube channel has been viewed 17,194 times since its creation in November 2017, which is 1,036 hours of playback time.

Alpha-1 Germany have gathered more and more relevant information regarding Alpha-1-Antitrypsin Deficiency (AATD) over the years and have linked up with numerous other organisations. Therefore, in 2022, Alpha-1 Germany hopes to see their organisation become “WIKI” – a central and accessible information hub for all questions people in Germany have related to AATD.

Fundación Respiralia looks back on Swimming Tour success of 2021 and prepares for this year’s event

The Respiralia Foundation’s greatest achievement in 2021 was to be able to carry out the Swim around Formentera against cystic fibrosis (CF). It is the event for which they raise the most money to improve the lives of people with CF and it is a great way to raise awareness of the disease among more people. The pandemic posed many obstacles, but they were able to hold the event in compliance with all safety measures. They are already preparing the event for 2022. Stay up to date via their website and social media channels: https://www.respiralia.org/en/

Swedish Asthma and Allergy Association vice-president reflects on 2021 and hopes to further strengthen relationships in 2022

For Astma och Allergiförbundet, the Swedish Asthma and Allergy Association, 2021 was a huge success. Many politicians heard what patient representatives are doing and trying to achieve for people with asthma and allergies. The Northern part of Sweden nearly lost the pollen count, but it is now financed by the Government. The association had an online event called ‘Allergilyftet’ and over 1,000 people participated, including healthcare professionals, politicians, nurses, members and other decision makers, to raise awareness about allergies and asthma. Next year is an election in the Swedish Parliament and the hope is to get a Swedish allergy programme like the one in Finland.

Mikaela Odemyr (pictured on the right), vice-president of the Swedish Asthma and Allergy Association and Chair of the ELF Patient Advisory Committee (PAC), hopes to continue having great PAC meetings to work together as a team to share expectations and experiences with each other. It is important to her to have the patient voice heard and listened to and that patient representatives are asked to join different Task Force groups and events together with the healthcare professionals. Mikaela loves working with the PAC members, ELF staff and Chair Kjeld Hansen, and believes that together they make an excellent team of advocates and a strong European Patient voice in lung health. She hopes to get more MEPs to the MEP Lung Health Group and continue the work for better lung health.

One of Mikaela’s wishes for 2022 is to be able to have some face-to-face meetings again to strengthen relationships and networking.

Find out more about the Swedish Asthma and Allergy Association: https://astmaoallergiforbundet.se/

PAHSSc rounds off 2021 with exciting new initiatives

The end of 2021 was a busy time for Pulmoner Hipertansiyon ve Skleroderma Hasta Derneği (Pulmonary Hypertension and Scleroderma Patient Association (PAHSSc).

• They continued their live broadcasts with patients and visited seven of the pulmonary hypertension (PH) centres in Turkey, interviewing the specialists and gathering knowledge on the facilities. These recorded visits will soon be broadcast on social media.
• The December issue of their magazine NEFES (Breath) focused mainly on organ donation and transplantation with patient stories and doctor interviews.
• The Six Minute Walker, the first ever video game to raise awareness on an illness, was finally approved by Google. It is available in both Turkish and English. Approval is still pending for the IOS version. You can send any suggestions for improvements to pahssc@gmail.com

The priority for PAHSSc in 2022 is to ensure that the association has a stronger institutional structure and be as active as in 2021.

Download the Six Minute Walker game: https://play.google.com/store/apps/details?id=com.appricode.sixminutewalker

Read more of PAHSSc’s news: https://www.pahssc.org.tr/almanak/17/almanak-2021

LAM Academy Sweden looks back on virtual events in 2021 and shares goals for 2022

During 2021, all of LAM Academy Sweden’s activities were carried out digitally due to the COVID-19 pandemic.

• A number of Zoom events were held where members had the opportunity to connect and discuss different relevant topics.
• At the LAM Academy’s annual meeting, a lecture of LAM basics was presented by the LAM specialist who works closely with the association.
• The LAM Academy had a patient representative present at the virtual ERS Congress 2021, who reported highlights from the meeting and a summary of the LAM abstracts that were presented at the Congress.

LAM Academy’s prioritised goals for 2022 are to raise awareness of the importance of LAM research, and act to support international research collaborations. The association also has plans to establish a LAM research foundation.

Associazione Italiana Bronchiettasie plans exciting activities for 2022

Associazione Italiana Bronchiettasie, or the Italian Bronchiestasis Association (AIB), is starting 2022 with a full range of initiatives and news:

• 7 free webinars launched in collaboration with AIB scientific committee from 18 November 2021 to 24 February 2022
• 5 free yoga meetings for AIB members
• 4 free meetings “LADY WINDERMERE” for AIB members

AATP chooses COVID-19 and mental health as top priorities for 2022

In 2021, Associação de Transplantados Pulmonares de Portugal (Portuguese Lung Transplant Association (ATPP)) focused on support for lung transplant patients through the pandemic. They worked to defend patients’ rights to competent authorities – namely in respect to vaccination priorities – and delivering accurate and reliable information on special precautions and scientific data on their Facebook page, a social network that has proved to be a fundamental help in times of serious health crises and lockdowns.

In 2022 ATPP aims to continue to support patients in the best way possible, choosing mental health as a top priority. In fact, the feedback they have been receiving from patients strongly indicates how important a psychological balance is both to overcome the long and complex transplant process, as well as to deal with the current pandemic, which is particularly dangerous for these patients.

AATP has also established as a goal in 2022 to improve the comfort conditions of their patients during their hospitalisation, since lung transplant often needs long periods of medical care and functional recovery.

GAAPP holds COVID-19 vaccine webinar and sets goals for 2022

On 10 December 2021, the Global Allergy & Airways Patient Platform (GAAPP) conducted the webinar “COVID-19 Vaccines: The Allergology and Immunological Perspective”. Aimed at the patient leaders of GAAPP’s member organisations, they explained how the different COVID-19 vaccines work and their possible side-effects for patients with allergies or atopic diseases. Moreover, they cleared up misconceptions about the contraindication of the vaccine for some chronic respiratory and atopic diseases. They also made a deep dive on measuring tryptase to diagnose if there is a reaction and the possibility of anaphylaxis.

You can watch the lecture on this link: https://www.youtube.com/watch?v=Okk7mWjbz8o

GAAPP goals for 2022:

• Continue to host annual events (GRS, Scientific Meeting, Global Food Allergy Summit, and the Annual General Meeting). As vaccination efforts advance worldwide and the pandemic travel restrictions ease, GAAPP will aim to return to a semi-presential summit model again.
• GAAPP will continue with their awareness day campaigns for asthma, COPD, urticaria, atopic dermatitis & World Lung Day.
• Policy-making: GAAPP will continue to advance the agenda for global improvement of the national healthcare systems and the prioritisation of chronic respiratory diseases with governments and supra-national institutions such as WHO with their two main coalitions: The Respiratory Right Care and the International Respiratory Coalition.
• Advance efforts to generate evidence and disseminate information about Type 2 Inflammatory Diseases (EDDs).
• Creating tools for shared decision-making.
• Promoting health equity.
• Building capacity within member organisations.

Action for Pulmonary Fibrosis looks back at range of webinars in 2021

Throughout 2021, Action for Pulmonary Fibrosis (APF) worked hard through the ongoing COVID-19 pandemic to support patients and carers in their homes. Highlights for the year included a series of live webinars. In the spring, ‘Talking PF’ live webinars covered a wide range of topics from oxygen therapy and pulmonary rehabilitation to psychological support and caring for a loved one. To coincide with the theme of ‘managing cough’ for PF Month, APF streamed a live webinar with leading cough expert Professor Surinder Birring. During November the charity ran their first Patient Information Day with The Royal Brompton Hospital with talks from leading respiratory experts.

APF is gearing up for a busy 2022. The year kicks-off with the next phase of their partnership with the James Lind Alliance to set the future research priorities for pulmonary fibrosis.

Aspergillosis Trust shares 2021 achievements as well as hopes and dreams for 2022

Despite another difficult year due to the COVID-19 pandemic, the Aspergillosis Trust (AT) made some great achievements:

• They became an official charity.
• They launched a YouTube channel and produced their first interview video with a healthcare professional: https://youtu.be/BO_lLZstuhc
• They gained new and interesting partnerships with some other mutual charities and cemented relationships with a selection of doctors and scientists in the medical mycology field.
• They took part in World Aspergillosis Day which was well received and helped to raise awareness of the disease.

AT has some exciting new hopes and dreams for 2022, including:

• To become THE place to find information on aspergillosis
• To raise awareness of aspergillosis with both the general public and the medical community around the world
• Do more interviews with healthcare professionals to help spread their messages globally
• Create more promotional material as part of their partnership with GoodWork
• Create a small study fund for students in the mycology field
• Create a new and more modern website, with hopes to raise their profile and bring more visitors
• Get more celebrity supporters to help in their mission of passing on the knowledge and awareness of aspergillosis in all its forms

Lovexair holds successful Ibero-American Respiratory Patient Summit and sets challenge for 2022

Fundación Lovexair organized the 3^rd Ibero-American Respiratory Patient Summit 2021: “Leaders of the future: Social, Clean air, Health & Digital”, which was held on 1-3 December 2021.

Dr. Maria Neira, Director of the Department of Environment, Climate Change and Public Health at the World Health Organization, hosted the opening session and spoke about the challenges in respiratory health and how to protect people from the impact of air pollution and climate change. She urged the health sector to take an active role and lead the changes needed to tackle this public health issue globally.

The event gathered 52 international speakers and over 600 participants from 36 countries. Compared to 2020, the number of registered people increased by 33% and the average number of participants per session rose by 150%. For the first time, key USA organizations joined for this event. 15 sessions were held in English and Spanish.

More information about the programme and presentations is available at: https://www.lovexair.com/pages/3-cumbre-iberoamericana-de-pacientes-respiratorios

Video (English version): https://youtu.be/fHrHNYJ-PZE

Results video (in English): https://www.youtube.com/watch?v=wwrL5-OClZA

Lovexair’s challenge for 2022 is to continue working collaboratively with patient representatives and organisations, healthcare professionals and key industries globally. The new digital era requires a collective intelligence to respond to people’s real needs in health and wellbeing.

PHURDA ends 2021 with more great initiatives and outlines big goals for the year ahead

Асоціація рідкісного захворювання України – Легенева гіпертензія (Pulmonary Hypertension Ukrainian Rare Disease Association (PHURDA)) ended 2021 with a wonderful initiative to collect and give gifts to children with pulmonary hypertension (PH), children of PH patients and children whose parents died from PH.

They were also part of PHA Europe’s “O2 Kids” project – a fundraising campaign to raise money for electric scooters and portable oxygen concentrators for children.

In cooperation with the NGO Inshyi pidhid, PHURDA launched the ‘Give a child a laptop’ campaign. For this the organisation collects used PCs, checks, tests and repairs them if needed and then gives them to children on the ward.

PHURDA’s biggest achievements in 2021:

• The ‘Orphan Bell’ movement – a round table meeting ‘The Day of Orphan Diseases’ in the Lviv Regional Council with the leadership of the Lviv region representatives of health and social protection. The meeting consisted of discussions about the situation of orphan patients in Lviv region and their access to diagnosis, treatment and rehabilitation for people with PH, tuberous sclerosis, mucopolysaccharidosis, mucoviscidosis, VDDR2a, cystic fibrosis, Gaucher disease, SMA, cdkl5 and Acromegaly.
• The portrait exhibition “Invisible Heroes” was opened on the main square of Lviv, dedicated to Rare Disease Day. Portraits of patients with rare diseases were shown at the exhibition.
• PHURDA received a 2^nd place award from the ‘Charitable Ukraine’ Contest for holding the O2Kids project.
• In autumn they started a new fundraising project that consists of holding face-to-face and online training on different topics. The first webinars were dedicated to time management.
• In October, with support of NGO Inshyi pidhid, they held the online Blue IT Butterfly project. It was created for PH patients and others who suffer from any medical condition and are unable to work off-line and full time.
• They held 4 webinars involving different speakers: HR, IT specialist, project managers. Participants got to know how and where it is possible to work in IT, how to start, what soft and hard skills are necessary etc.

Plans and hopes for 2022:

• Uninterrupted supply of medicines to patients with PH in Ukraine
• Rehabilitation of patients with PH (physical and psychological) in Ukraine
• Development of organ transplantation in Ukraine
• Implementation of the Educational and Social Project 2Club-type Beauty Salon: Butterfly in Blue2

EFA holds ‘Meet and Greet the EU’ training session

On 14 December, the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) held a ‘Meet and Greet the EU’ training to facilitate member involvement in EU-funded research. The event featured patient experts from Patvocates and EUPATI speaking on the importance of patient involvement in research. EFA members then shared their own experiences as individual patient participants and as organisations facilitating community involvement for projects that they co-developed at the EU level. The session concluded with an overview of EU funding taxonomy related to health, with a high-level speaker from the new Health and Digital Executive Agency and some practical guidance on how to get involved from the Belgian National Contact Point for Horizon Europe.

SarcoidosisUK launches Patient Day Hub

One of the main goals of SarcoidosisUK is to provide high-quality information to sarcoidosis patients – a key way that they achieve this is through Patient Days. Their new Patient Hub webpage contains links to all of their previous Patient Events, which you can watch back at any time.

Visit the Patient Hub: https://www.sarcoidosisuk.org/information-hub/about-sarcoidosis/sarcoidosisuk-patient-day-hub

EURORDIS’ Resolution is officially adopted by all 193 UN Member States

Rare Diseases Europe (EURORDIS) is pleased to announce that the UN General Assembly has formally adopted the UN Resolution on Addressing the Challenges of Persons Living with a Rare Disease and their Families.

This is the first ever UN text to give full visibility to the over 300 million Persons Living with a Rare Disease (PLWRD) worldwide and calls for action to address the specific challenges faced by PLWRD and their families. The Resolution is co-sponsored by an unprecedented 54 countries and was adopted by consensus by all 193 UN Member States. The document focuses on the importance of non-discrimination and the key pillars of the UN Sustainable Development Goals, including health, access to education and decent work, reducing poverty, tackling gender inequality, and supporting participation in society.

This is a major shift in international policy which places the needs of PLWRD firmly on the agenda of the UN and its agencies (UNICEF, UN WOMEN, UNDP).

Watch the official adoption: https://youtu.be/-v7ZovIcPTk