Patient Organisation Round-up: December 2023

The patient organisation Alpha1-Deutschland has welcomed its 1000^th member! What a success for a rare disease like alpha-1 antitrypsin deficiency and how nice that we can celebrate this during Alpha-1 Awareness month, November. The new member sends a message to the Alpha-1 community:

I’m Birthe from Wuppertal and my heart is beating with joy because I’m the 1000^th member of Alpha1 Deutschland! With my Crohn’s disease, ankylosing spondylitis and psoriasis, I’m really looking forward to going through thick and thin with you. Marion, thank you so much for the refreshing conversation on the phone and the wonderful “Herzstück” – a warm welcome that touches my soul. Let’s laugh together, learn from each other and, above all, fight together. This is not just about membership, but about a big supportive family. May we have many moving moments and lots of power!

As 2023 comes to a close, the Alliance for Pulmonary Hypertension (AfPH) is proud to share the accomplishments of its inaugural year. The introduction of the “Pulmonary Hypertension Knowledge Sharing Platform” (PH-KSP) in May marked a significant milestone, establishing a central hub for carefully curated, expert-endorsed, and topical information resources in various languages and formats. With 500+ materials, the PH-KSP has made a substantial impact, reaching 6,000 views and 1,600 visitors from 56 countries across six continents.

Affirming its commitment to education, AfPH has also hosted six live webinars aimed at exploring the innovations introduced by the 2022 joint European Society of Cardiology (ESC) and European Respiratory Society (ERS)’s guidelines for pulmonary hypertension (the very first with patient representatives as co-authors). Featuring insights from world experts, these webinars, along with their recordings on the PH-KSP, have attracted a commendable number of views. Looking forward, AfPH remains dedicated to advancing education, awareness, and support for those navigating pulmonary hypertension.

GAAPP and its member organisations joined forces to Speak-Up for COPD. The campaign is intended to raise awareness of COPD amongst policymakers and healthcare decision-makers by amplifying the voices of the COPD community and the public. Our one critical goal is to establish COPD as a public health priority. The global cost of COPD is estimated to rise to US $4.8 trillion in 2030, but it does not receive the political attention or funding proportionate to its population and societal burden.

The Respiralia Group not only works to improve the quality of life of people with Cystic Fibrosis but is also very committed to the environment. Therefore, it organised a clean up of the beach in Ibiza and a lot of waste was collected. They hope to do many more clean ups and and continue with their reforestation project in Mallorca.

Sarcoidosis is a complex and often misunderstood rare disease that can cause many debilitating symptoms. This poses a challenge for individuals with sarcoidosis who are seeking disability benefits, as assessors may not fully understand the condition. SarcoidosisUK has worked with Independent Assessment Services to create a Condition Insight Report for their Personal Independence Payment (PIP) assessors to help address this problem. Assessors will now be advised to refer to this report when preparing for their assessments as it provides accurate and up-to-date information about sarcoidosis, emphasising its systemic nature and addressing misconceptions. We hope this report will help ensure that individuals living with sarcoidosis receive the support they deserve. Sarcoidosis affects everyone differently; therefore, the Condition Insight Report may not cover all possible symptoms and information. Our report emphasises the variation in symptoms and severity that people with sarcoidosis experience to account for this. This is the second assessment provider we have worked with to create a Condition Insight Report and we hope to work with more in the new year to improve the awareness of sarcoidosis among PIP assessors.

The Student Voice is an annual international essay competition hosted by Medics for Rare Diseases and Rare Beacon. The competition helps to raise the profile of rare diseases within the medical field, particularly amongst medical students, nurses and scientists who may never have come across rare diseases in their training. This year, two members of the Aspergillosis Trust took part and they both got to spend a lovely hour talking to a medical student about their experiences. The winners will be announced on the 29 February 2024 and the winning essay will be published in The Orphanet Journal of Rare Diseases.  Below is a link to the essay written last year which sadly didn’t win but still helped to raise awareness around aspergillosis.

During Lung Cancer Awareness Month, ALK+ UK joined forces with EGFR+ UK and the Ruth Strauss Foundation for the ‘All You Need Is Lungs’ campaign. This collaborative effort aimed to raise awareness about lung cancer in people who have never smoked.  The campaign has seen remarkable success, largely due to the invaluable contributions of the 24 volunteers. Each of these individuals, non-smokers who have been diagnosed with lung cancer, lent their faces and stories. Their involvement not only humanised the issue but also shed light on the often-overlooked reality that lung cancer can affect anyone, regardless of their age or smoking history.  Their stories have resonated across communities, fostering a greater understanding of lung cancer and its wider impact. The ‘All You Need Is Lungs’ campaign underscores a critical message: persistent symptoms demand attention, irrespective of age or smoking history. As November concluded, ALK+ UK’s commitment to raising awareness and advocating for early detection of lung cancer persists. In partnership with EGFR+ UK and the Ruth Strauss Foundation, ALK+ UK remains steadfast in its dedication to this vital cause.

In European Cystic Fibrosis Week, the Spanish Cystic Fibrosis Federation (FEFQ) launched “ACCIONES”, an awareness-raising campaign aimed at companies to promote the employment of people with Cystic Fibrosis (CF) and other chronic illnesses. This type of disability has the added difficulty of being invisible, which makes it difficult for it to be accepted as normal in workplaces. The European CF Week, held from 20–26 November, aimed to raise awareness of the disease and demand equal opportunities for all people with CF, regardless of the country in which they were born. Specifically, 47% of people with CF are of working age and ready to enter the labour market. However, they still face many difficulties in maintaining employment, mainly due to the lack of flexibility in their working conditions. Therefore, with this campaign, the FEFQ is directly targeting companies and employers. It is up to them to understand the needs of people with CF or other types of organic disability and to put in place measures to show that these employees can be just as productive.

Every time PHURDA meet in Barcelona during the Annual PH European Conference, they feel inspired and confident in the future of PH patients. This year, representatives of 23 countries attended the conference, and three countries – Argentina, China and Japan – became new members of PHA Europe. 8 speakers were invited to the conference, including Adam Torbicki and Ioanna Pepke-Zaba. These speakers were important to Ukraine because they actively helped patients during the first months of the war at the beginning of the full-scale invasion of Russia. The war made PHURDA stronger and more visible in the European and world arena of medicine. Among the speakers at the conference there was a representative of ERN Lung, Gergő Mészáros. In his presentation he mentioned Ukraine’s membership in ERN Lung and the possibility for doctors to participate in the ERN Lung Academy. While representing the Ukrainian PH community, PHURDA also tried to learn more about the situation of rare and respiratory diseases in European countries. PHURDA also spoke about the excellent training tool for patients, ELF’s European Patient Ambassador Programme. “For me, the platform was a kind of ‘elevator’, which led to me becoming an ELF Council member”, said Oksana Kulish. PHURDA also talked about the newly-created PH PAG at the European Lung Foundation. The creation of the group is an important step in shaping and strengthening the voice of the European community of respiratory diseases, in particular PH.

This year on 21 October, FFAAIR and the local association AIR53 organised the traditional National Sleep Apnoea Day in Lavel.

The European Alpha-1 Antitrypsin Deficiency (AATD or Alpha-1) patient community is proud to announce that the Alpha-1 Europe Alliance is established and operational in Belgium as of 17 October 2023.  For the past year, leaders of national Alpha-1 patient organisations across Europe have united forces to create an Alliance that will represent Alpha-1 national patient organisations in Europe and advocate for access to timely diagnosis, individualised care, and holistic therapies. On 27 November, the members of the Alliance met for the first General Assembly to align on priorities for the upcoming year. Members include organisations from Belgium, Germany, Italy, Spain, Switzerland, UK, Austria, Denmark, Portugal and Romania.  Collaborating in this Alliance, the Alpha-1 patient community will engage in policy discussions to improve access and foster research toward a cure, ensuring patients’ involvement in research and clinical trials. The Alliance will undertake campaigns to familiarise the European population with the challenges of living with Alpha-1 and will also support member organisations in building their network, reach, and capacity.

The “Festival of the Trees”, held on November 25, 2023 at the “Tutti insieme” (“All together”) Park in Rome, aimed to highlight the fundamental role of trees for the health of our planet. The National Patients’ Association Respiriamo Insieme, in collaboration with SITAB (Italian Society of Tobaccology) and the Smoke Control Center of Policlinico Umberto I, under the patronage of the Lazio Region (Department of Social Policies), AIPO Lazio (Italian Association of Hospital Pneumologists) and the Council of Pneumology, carried out a day of prevention, awareness and environmental protection.  Representatives of La Sapienza University and delegates and the Social Policies Councillor of the Lazio Region also participated at the event. Specialist examinations and other activities for the prevention of smoke-related diseases were ensured, and face-to-face lectures aimed at the target population took place. Patients of the Smoke Prevention Center were interviewed as people who managed to quit smoking, and gave their important testimony. The big “Festival of the Trees” culminated in the tree-planting ceremony with the involvement of patients and the public.