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Alpha1 Germany eV.
An autumn full of knowledge. Exciting events, insights and more!
Summer is drawing to a close – autumn is on its way, with fresh air and milder temperatures. The perfect time to get active again! And what better way to do so than by attending one of the many excellent events we'd like to recommend today? From webinars and support group meetings to large-scale events, there's something for everyone, and surely something near you.
We are especially pleased to be a cooperation partner once again at the South German Patient Day on September 23, 2023, in Stuttgart – a day full of information and the joy of seeing each other again. Under the scientific direction of our advisory board member, Dr. Alexander Rupp, this event has become an integral part of our Alpha-1 world, and the large number of attendees demonstrates the wide range of activities on offer. For example, there will be the opportunity to have liver examinations performed by Prof. Strnad's team from Aachen, and much more. For more information and to register, click here. here.
A new location for a patient day is Kempten in the Allgäu region. Here, on September 30, 2023, in a beautiful setting, a patient day will take place under the direction of Prof. Dr. Christian Schumann and with the support of CSL Behring, covering the topics: Diagnosis of AATD, Rehabilitation and AATD, and the Liver, on the occasion of the 26th German Lung Day.
You're sure to find something that fits into your autumn plans. It's always worth checking our events calendar regularly.
We've also kicked off the autumn season with some exciting new ventures: Alpha1 Deutschland eV is now on Instagram! Our member Frieda, 19, has kindly agreed to post about the patient organization's activities. We plan to share a diverse mix of information, events, and reports on this social media platform, so please take a look and follow us. Thank you, Frieda!
Improving the SoHO Regulation
Being politically active is one of our tasks. For example, on September 12, 2023, we submitted a petition to the EU Petitions Committee regarding the SoHO Regulation (SoHO = Substances of Human Origin). This regulation is currently being discussed and debated within various EU bodies, and an agreement on the final text is expected in the second quarter of 2024.
The SoHO Regulation addresses the safety and quality of donated blood, tissue, and cells in great detail, and naturally contains many positive aspects for recipients of plasma components. However, where these aspects conflict with our interests, we wish to demand improvements through our petition. You can find more information about the SoHO Regulation here. here.
We would, of course, be very pleased to receive your support for our petition. However, this is only possible if it is accepted by the EU Committee on Petitions and subsequently published on the petitions portal. As petitioners, we will be notified of this, and we will, of course, keep you informed about the progress of the process.
Current news about alpha-1 antitrypsin deficiency
1. News from Grifols
In July, the welcome press release was published announcing that Grifols had reached its recruitment target for its Phase 3 trial. The study is investigating the efficacy and safety of two dosages of Prolastin®-C (60 and 120 mg/kg/week) compared to placebo over 156 weeks. The clinical trial is being conducted in 16 countries (at more than 50 sites in total) in patients with emphysema due to alpha-1 antitrypsin deficiency. Whether the dosage has any effect or improvement will be measured by the rate of lung tissue loss (primary endpoint), specifically by measuring whole lung density using computed tomography (CT).
2. Press release from CSL Behring
Progress for patients with lung diseases: CSL Behring in Marburg helped found the Open Source Imaging Consortium (OSIC), an AI-powered database that has collected thousands of lung scans. The non-profit research organization will further expand its mission and also collect data on the rare disease alpha-1 antitrypsin deficiency.
3. Lung Information Service
We often hear about the successes of biologics, particularly in asthma therapy, which raises the question: why isn't this also possible for COPD? Biologics are produced using genetically modified living cells from animals, plants, or microorganisms. They are not new; they have been produced for over 40 years. Now, initial successes have been achieved with a biologic (dupilumab) in the treatment of COPD.
4. COPD and smokers
What protects some smokers from COPD? Is it perhaps not all self-inflicted after all? At the German Center for Lung Research, a protective mechanism has been discovered that could be used in the future for risk assessment and also represents a starting point for new treatment options.
WDR visits the patient day in Bad Wildungen
On TV: "I'm Becoming a Doctor – Made in Marxloh (S03/E03)." The story of Şilan, who grew up in a socially disadvantaged neighborhood and is now on her way to becoming a doctor. An interesting story with fascinating insights. And the best part: A small part of the documentary was filmed at our patient day in Bad Wildungen, because Şilan is part of the team at Aachen University Hospital. The nearly 30-minute WDR program is still available in their media library.
Review of the virtual 15th Lung Symposium from September 2nd, 2023
The motto and theme of this year's Lung Symposium was: "Well-informed – from diagnosis to therapy." The following topics were covered in eight clearly presented lectures:
- Differentiation of COPD, pulmonary emphysema and asthma
- Inhalation therapy options for asthma or COPD
- Vaccination prophylaxis as an important pillar of therapy
- Anti-inflammatory diet and weight loss in COPD
- Breathing therapy – exercises to participate in
- Detection and treatment of exacerbated COPD at the pulmonary clinic
- Long-term oxygen therapy and non-invasive ventilation are two important pillars of therapy.
- and palliative medicine: What exactly is that?
Both the lectures and answers to previously submitted questions can now be accessed by all interested parties on the homepages of the organizer and co-organizer via the following links:
COPD – Germany eV.
Patient organization for pulmonary emphysema and COPD in Germany
The next newsletter is already in the works and will include, among other things, the following topics:
- What is Covid-19 doing this winter? Are there any recommendations for Alpha-1 patients?
- New findings from the ERS (European Respiratory Society) Congress
- New studies are on the way
We look forward to many great events this autumn, and please stay healthy. Don't forget to schedule an appointment for your flu shot. The best time to get vaccinated is late October or November, as the flu season often doesn't hit until around the New Year. Full protection develops 10 to 14 days after vaccination.
