Patient organisation round-up: June 2022

Organisations across Europe and beyond have been involved in a range of activities over the last month, including conferences, patient days and awareness day campaigns.

Image of Fundación Contra la Hipertensión Pulmonar

Pulmonary hypertension news

Foundation Against Pulmonary Hypertension celebrates World PH Day with a range of activities

The Foundation Against Pulmonary Hypertension (Fundación Contra la Hipertensión Pulmonar – FCHP) celebrated World PH Day on 5 May. Activities included:

  • Illumination of emblematic buildings in important Spanish cities
  • Launch of ‘solidary socks’ – proceeds go to PH research
  • Solidary concert
  • Taking in of a Ukrainian refugee family with PH
  • Participation in ‘Multidisciplinary Days’ of PH in the University Hospital Gran Canaria Dr Negrín
  • Information desk at the University Hospital of Barcelona
  • Dissemination of PH information at the Barcelona International Comic Fair

PHA UK publishes guide to palliative care for PH

The Pulmonary Hypertension Association UK (PHA UK) has published a new guide to palliative care for people with pulmonary hypertension (PH). As well as the facts, the book contains several stories from people who have experienced palliative care with PH, either as a patient or a loved one. It also captures the voices of PH professionals who are experienced in palliative care. The guide includes a separate Anticipatory Care Plan booklet, tucked inside the back cover, to help people plan for the future. Patients and healthcare professionals can order a copy for free.

PHA Europe celebrates 10th anniversary of World PH Day

The European Pulmonary Hypertension Association (PHA Europe) celebrated the 10th anniversary of World Pulmonary Hypertension (PH) Day, which takes place each year on 5 May. To mark this special anniversary year they invested huge efforts to make it memorable.

They held the first-ever face-to-face MEP Lung Health Group event at the European Parliament (read more), organised other events and built up a global online campaign.

PHA Europe achieved an enormous reach of 2.6 million people on their social media channels with their visuals, which were posted for 3 weeks based on a timetable. The visuals were translated into 17 languages and shared by local member associations, meaning even more people were reached.

They also organised an online anniversary webinar. The presenters, Irene Delgado, Prof. Nazzareno Galie and Prof. Gerald Simonneau were the same ones who attended the first World PH conference in Madrid on the 5 May 2012. The webinar covered the advances in the field of PH. Attendees could learn about the first conference, and everyone felt it was heartwarming that such a conference had grown to a truly global initiative. The webinar was closed with the release of PHA Europe’s anniversary video.

PHA USA celebrates former CEO’s life and achievements and launches social media campaign for World PH Day

The Pulmonary Hypertension Association (PHA) in the USA are mourning the death of their former CEO, Rino Aldrighetti. Aldrighetti, who led PHA for more than 30 years, died on 30 May. As they celebrate Rino’s accomplishments, they prepare for the PHA 2022 International PH Conference and Scientific Sessions. PHA 2022 returns in-person for the first time since 2018, on 10-12 June 2022 in Atlanta, Georgia, United States.

In other news, PHA joined the international PH community on 5 May to celebrate World PH Day. PHA’s social media campaign showed that “Pulmonary Hypertension Has No Borders.” As part of World PH Day celebrations, PHA President and CEO Matt Granato participated in PHA Europe’s call-to-action meeting on “Unmet Needs in Patients with Pulmonary Hypertension – 2022.”

Sarcoidosis news

Recordings available for recent SarcoidosisUK Patient Day and registration open for upcoming Neurosarcoidosis Patient Day

On 28 April 2022, SarcoidosisUK and The Royal Brompton & Harefield Hospitals hosted a virtual Sarcoidosis Patient Day. They heard from a variety of speakers on a range of topics, with eight different sessions throughout the day. If you missed any of the talks, or would like to watch them again, the recordings and transcripts for each session are now available on the SarcoidosisUK website.

SarcoidosisUK is excited to announce that their next Patient Day will take place on 11 June. This will be their annual Patient Day on Neurosarcoidosis. It will be a virtual event taking place from 14:00-17:00 BST and registrations are open now. They will be hearing from Neurosarcoidosis experts Dr Kidd and Dr Higgins who will give a talk about mental health. Register here.

FSR holds Global Virtual Patient Summit: Unveiling Possibilities

The Foundation for Sarcoidosis Research (FSR) invites newly diagnosed and long-term sarcoidosis patients, caregivers, and family and friends of someone impacted by sarcoidosis to attend this year’s FSR Virtual Patient Summit: ‘Unveiling Possibilities’. It will take place on 30-31 July 2022 at 8:00-17:00 CT.

The Patient Summit will bring connection, expertise, and shared experiences to help you and your loved ones throughout your sarcoidosis journey! Join FSR and world sarcoidosis experts for exciting sessions, engaging networking and discussion sessions, and tracks for both those who are newly diagnosed and those who are living with chronic sarcoidosis. Early Bird Patient/Supporter Registration is available for $60 until 30 June. Limited scholarships are also available until 30 June.

Learn more and register

Cystic fibrosis news

Spanish Cystic Fibrosis Federation holds its Ordinary Annual Assembly

On 7 May the Spanish Cystic Fibrosis Federation (Federación Española de Fibrosis Quistica – FEFQ) held their Ordinary General Assembly in Madrid, Spain. During the Assembly, continuing with the objective of supporting research, they decided to support a research project in phagotherapy at the University of Valencia. This will be done both with the donations received in 2021, as well as by channeling an initiative, proposed by several families to the Federation, to raise funds for this purpose.

Find out more

Respiralia carries out “You decide” workshop

The Cystic Fibrosis Balearic Association (Fundación Respiralia) carried out the workshop “You decide”, talking about CF and promoting healthy life in Menorca.

Find out more

Cystic Fibrosis Australia prepares for Australasian CF Digital Medical Conference

Cystic Fibrosis Australia are preparing for the 14th Australasian Cystic Fibrosis Digital Medical Conference, taking place on 13-14 August 2022. The event brings together researchers, clinicians, and allied health professionals from around the world to discuss and share cutting edge research, breakthroughs and good practice with peers and colleagues within the CF space.

Find out more and register

Asthma news

GAAPP adapts ‘Closing Gaps in Asthma Care’ in honour of World Asthma Day

In honor of #WorldAsthmaDay, GAAPP (Global Allergy and Airways Patient Platform) adapted GINA’s ‘Closing Gaps in Asthma Care’. They have asked global stakeholders to provide their insight and ideas on how to close those gaps. This materialised in eight “Reels” for Instagram, TikTok, YouTube and Facebook and a set of five GIFs that were shared globally during the whole month of May by 15 Patient Advocacy Groups in every continent via a communication grant.

Find out more

Sevilla Respira celebrates World Asthma Day and Asthma Week with various activities

In May Sevilla Respira celebrated World Asthma Day, and linked to this day their own ‘Asthma Week’. During this they carried out the following activties:

  • Round table on severe asthma – watch the recording
  • Information desk in a gym
  • Participation in a gathering on local TV

Other respiratory news

COPD Italian Patient Association holds Festa del RESPIRO 2022

The COPD Italian Patient Association (Assoiazione Italiana Pazienti BPCO), together with the National Association of Breathtaking Villages, organised the third annual ‘Festa del Respiro’ (Fesival of breath) in Scanno, in the Abruzzo National Park.

Find out more

Aha! Swiss Allergy Centre publishes brochure on pollen allergy

Aha! Swiss Allergy Centre has published a practical and comprehensible brochure on pollen allergy in an attractive design. It discusses triggers, symptoms and therapies as well as the effects of climate change on the most common allergy in the world. For ideal allergy management, an inlay guidebook provides interesting information about allergenic plants, the most important tips on how to behave and plants that allergy sufferers can plant in their garden or on the balcony.

Free download: French, German, Italian

Lovexair joins the 11° IPCRG World Conference & 2° Ibero-american Primary Care Respiratory Meeting

The Lovexair Foundation participated as a guest organisation at the 11° IPCRG (International Primary Care Respiratory Group) World Conference and 2° Ibero-american Primary Care Respiratory Meeting, held on 5-7 May 2022 at the Palacio de Ferias y Congresos in Málaga, Spain. Under the theme “Reunite, Evaluate, Advance”, this important event was organised by the IPCRG and GRAP (Grupo de Respiratorio en Atención Primaria) and gathered high quality global speakers, including the patient voice.

Watch the video to find out more about Lovexair’s presence at the conference.

Longfibrose celebrates work of retiring pulmonogist in leaving gathering

On Thursday 2 June, the Dutch Association of Pulmonary Fibrosis Patients (Longfibrose) attended the farewell of Prof. Marjolein Drent, a pulmonologist at the St. Antonius ILD (Interstitial Lung Disease) Center of Excellence who is retiring. A symposium was organised for her, followed by an informal gathering. She will remain a member of their advisory board and hopefully her extensive knowledge and expertise in the field of pulmonary fibrosis will still be used for a long time to come.

Respiratory Diseases and Allergy Organization organises educational programme in school

The Respiratory Diseases and Allergy Organization in Ghana organised an educational programme in Gumyoko School, rural Northern Ghana. The aim was to educate students and staff to enhance awareness on the increasing rate of respiratory infections and air pollution from domestic activities which contribute to breathing problems and increased hospitalisation, especially among children and the elderly. It discussed the need to seek early health care intervention and ways to prevent respiratory infections.