Patient Organisation Round-up: February 2023

Catch up on the latest news from patient organisations in our network.


Spanish Alpha-1 Patients’ Association (Alfa-1 España) plan trip to walk historical pilgrimage

The Alfa-1 Spanish Association has announced the second edition of its Alfas en Camino program. This trip will take patients with Alpha-1 Antitrypsin Deficiency, family members and caregivers to walk sections of the historical pilgrimage of the Camino de Santiago in Spain. The aim is to promote sports, physical exercise and contact with nature and fresh air as part of the daily life of patients affected by AATD or COPD. The trip, which will be held in June, will cover the Leonese region of El Bierzo.

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Taking ‘action’ in the UK for PF

Action for Pulmonary Fibrosis (APF) is delighted to have secured over 10,000 signatures to their petition urging UK politicians and the Secretary of State for Health and Social Care to fund a health service for people with pulmonary fibrosis that is equal to cancer care. Read the latest response here.

The year 2023 marks APF’s 10th anniversary year. To mark this landmark, APF secured a high profile fundraising appeal on national TV with a BBC Lifeline Appeal. This has resulted in increased awareness of the issues faced by people living with PF in the UK as well as much needed funds.

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World Aspergillosis Day 2023

The Aspergillosis Trust have been busy sharing information and posters for World Aspergillosis Day. This year the theme was a “Call To Arms”.  They explained that many patients can take up to 4 years to be diagnosed and our antifungals are becoming less effective. We need to spread more awareness about this life changing condition. We need more people to join us in this fight.

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Two new organisations join FENAER’s collective project

The Spanish Association of Scleroderma and the National Association of Sarcoidosis Patients have joined with the Spanish Federation of Allergy and Airways Diseases Patients’ Associations (FENAER). The Federation now has more than twenty members working to support respiratory patients. Find out more about the organisation.


PCD Support UK introduces £100 one-off payment to help those in need

For those living with chronic illness, winter is already a tough time of year, but add in the cost-of-living crisis, and it makes for an even more stressful season as the fight against cold and damp sets in. PCD Support UK has opened up applications for those with Primary Ciliary Dyskinesia for a one-off payment of £100, under the Cost-of-Living Grant to assist those in need. They are delighted to share that they were inundated with applications, and 52 applicants will be receiving a payment by 10 February 2023. The money will make a huge difference to them in being to afford heating, food, travel expenses and medication costs.

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Cystic Fibrosis associations take part in a project about quality management

During 2022 a total of 10 Spanish CF associations participated in the project “From the individual project to the collective project. Good practices in Cystic Fibrosis”. This was implemented by the Spanish Cystic Fibrosis Federation (FEFQ) and progress has been made in the quality management of all CF associations. With this project, the FEFQ has held 22 group videoconferences for personalised advice to associations, 19 individualised advice sessions for members of the board of directors and technical team and 3 training workshops have been held on drawing up strategic plans and equality plans. As a result, all of the participating associations passed the intermediate quality assessment and 3 of them obtained the certificate at a higher level than the one they started with. The FEFQ is committed to quality in its daily work and also in that of its associations. It understands that the objective of managing with quality and obtaining this type of certification improves the quality of life of the people it serves.

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Activities from the Turkish Pulmonary Hypertension and Scleroderma Patient Association (PAHSSc)

January 2023 was spent acting as an advocate and pressure group for Treprostinil and oxygen users. In late 2022, the importer for the equipment changed and the new company was not able to deliver the equipment to patients.

PAHSSc contacted the Ministry of Health and other official departments in the capital to convey this situation and urged the authorities to act on this important matter. Another major issue is the electricity bills that keep rising for patients using oxygen concentrators at home. With the slogan ‘Breathing Should be Free,’ a PAHSSc member participated in an extensive interview on an independent TV channel and drew attention to this unjust issue.

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 ALERMA wins the 2nd prize at new scholarship awards

A project presented by ALERMA (Asociación de Alérgicos y Enfermos Respiratoriod de Málaga) has won second prize at the Cheisi ‘Respirar es Vida’ Scholarships. The project involved spending a weekend in the Fuente Piedra Natural Park, doing respiratory physiotherapy in the middle of nature while breathing fresh air. The trip also involved two days enjoying nature and visiting the Fuente de Piedra Lagoon, a refuge for pink flamingos and other birds.

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Alpha-1 global research conference and patient congress comes to Ireland

The Alpha-1 Global 5th Research Conference and 8th Patient Congress is taking place in Dublin, Ireland on 14-15 April 2023. It is the largest international gathering of Alphas, their families, leading researchers and healthcare professionals in the world.  It is a two-day event with talks by national experts and leaders in the Alpha-1 field.

The conference gives attendees the opportunity to network and increase their understanding of Alpha-1. Patients diagnosed with Alpha-1, their families, researchers, industry representatives and healthcare professionals such as respiratory therapists, nurse practitioners, physicians, and nurses gather to learn and share their experiences. This the first global conference to take place since it was last was held in Croatia in 2019 and Alpha-1 Foundation Ireland is excited to welcome the global Alpha-1 community to Dublin.

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A report on the last congress in Croatia


Virtual Webinar: Uncovering the Future of Sarcoidosis Treatment and Clinical Trials

Join the Foundation for Sarcoidosis Research (FSR) and Kinevant Sciences Inc. on Saturday 18 February at 12:00pm USA Central Standard Time (CST), for a webinar on sarcoidosis treatment and clinical trials. The event focuses on what the sarcoidosis community thinks about and what they need to know when considering enrolling in clinical trials. This candid conversation with patients, clinicians and industry will take a deeper dive into the ways to balance the need for new and better therapies with personal considerations about health, family and time.

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EUFOREA’s 2nd Annual Global Chronic Rhinosinusitis with Nasal Polyps (CRSwNP) Awareness Day will be marked on 20 April 2023

EUFOREA will hold its 2nd annual Chronic Rhinosinusitis with Nasal Polyps (CRSwNP) Awareness day on 20 April, when it will also release its CRS pocket guide.

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