Alpha1 Germany eV, as published in Alpha1 Journal 1/2022.

In collaboration with HAEMA, a podcast about our condition was created at the end of 2024, in which we took the opportunity to explain Alpha-1 deficiency and also to thank our donors. Thanks also to our member Mika Röhming:

Petra Netzel, as appeared in Alpha1 Journal 1/2025.

Celebrating a birthday: a great opportunity to thank the entire HAEMA team for their work!

In 2024, over 26,000 donors were served at the Hellerdorf distribution center, and on some days more than 200 people come.

Cathrin Platta is the center manager and one of the center's earliest employees. She enjoys going to work and knows that the tasks she and her team perform daily improve quality of life and save lives. As a patient representative for Alpha1 Germany e.V., I was able to observe her work and would like to share my impressions with you here.

Britta Diebel, responsible for the festive arrangements of the 25th anniversary, welcomed the participants from Haema GmbH, the company Grifols and other guests.

The Governing Mayor Kai Wegner and Nadia Zivkovic, District Mayor of Marzahn-Hellersdorf, received a warm welcome.

In his welcoming address, Kai Wegner remarked on the calm and relaxed atmosphere at the donation center, noting that donors felt comfortable and at ease during their blood and plasma donations. He expressed his gratitude and appreciation to the donors and staff of the Haema Blood and Plasma Donation Center. He was surprised to learn that only three to five percent of citizens donate regularly and promised to focus more on public awareness campaigns to attract more donors and help save lives. He then appealed to all Berliners: "Those who donate blood and plasma regularly save lives."„

Nadja Zivkovic is campaigning for more blood and plasma donations. She said: “It is important to promote this.“.

Afterwards, a tour of the donation center followed, during which the guests gained insight into the daily work routine. Donors learned about the importance of plasma and its diverse uses through monitors on the walls of the donation room.

An exciting part of the ceremony was the donor recognition at the donor bed. Here, I had the privilege of walking across the "bridge" from donor to patient. All donors received much praise and recognition for their plasma donations, but especially Ronja Moll (34) and Hans-Jürgen Harras (67), who were celebrating their birthdays.

Ronja Moll works at the public health department, and during her lunch break, she saves lives by donating plasma – something she's been doing for ten years! Her 480th plasma donation was practically a birthday present! She started donating plasma after losing a loved one. She wants to "give something back" and help preserve and save lives.

Hans-Jürgen Harras has been donating plasma since 1997 and has amassed an impressive 927 donations. He is convinced that everyone may need a plasma donation at some point in their lives. For him, it is therefore a matter of course, and as long as he is allowed to donate and thus save lives, he will continue to do so.

Both donors have a wonderful attitude towards plasma donation, are extremely well-informed, and their conscious decision to donate deserves our full respect. As a token of appreciation, they each received a gift, and all the birthday guests thanked them warmly.

I informed them about our very rare disease, Alpha-1 Antitrypsin Deficiency, and that the seriously ill patients would have a shortened lifespan without plasma donors because our life-extending medications would not be available.

Dr. Ing. Heinz Stutzenberger, as published in Alpha1 Journal 2/2023.

A key objective of the EU is the smooth exchange of goods and services between its member states. An important contribution to achieving this objective is the harmonization of rules and regulations in key economic sectors, including healthcare.

Among the many different products generated and exchanged within the healthcare system are "substances of human origin," abbreviated "SoHO." With the exception of whole organs, this includes all substances extracted from the human body, such as skin, breast milk, egg and sperm cells, stem cells, bone marrow, blood, and blood plasma. The SoHO Regulation aims to standardize the safety of these substances, as well as their donors and recipients, to a high standard. It is currently being drafted within the relevant EU bodies and, following its adoption, expected in the second quarter of 2024, will be binding and must be implemented by all member states.

Both blood plasma and the products derived from it, such as alpha-1 antitrypsin needed for substitution and augmentation therapy, are scarce resources within the EU. Only four countries—Germany, Austria, the Czech Republic, and Hungary—meet the demand for plasma. This is possible because two different donation methods exist independently side-by-side in these countries:

• Public blood donation centers, such as the Red Cross, which are particularly popular in rural areas, offer blood donation appointments at schools or gyms at regular intervals of several months.
• Privately operated plasma donation centers are only profitable to operate in urban areas with high visitor frequency.

All other EU member states – like the EU as a whole – are undersupplied and heavily reliant on imports from the USA. The instability of this supply chain became evident during the COVID-19 pandemic, when supplies from the USA were restricted, leading to shortages of some plasma products in Europe. This experience led to the lesson that Europe must become self-sufficient in the supply of blood plasma and products derived from it. So far, measures to achieve this self-sufficiency are barely discernible, let alone implemented. The SoHO Regulation, developed with the commendable goal of increasing safety, contains, in the version adopted by the European Parliament in its first reading on September 12, 2023, a few passages that will hinder or even prevent the achievement of self-sufficiency in blood plasma.

Firstly, plasma donation is classified as a significant health risk for the donor.

• The underlying assumption is that the frequent removal of blood components causes their concentration in the donor's blood to drop below a level necessary for maintaining health (it's important to know that in Germany, plasma can be donated up to 60 times a year because it is quickly replenished in the liver; whole blood is only slowly replenished in the large bones and can therefore only be donated 4 times a year for women and 6 times for men).
• Statistical analyses have shown that even with twice the permissible donation frequency, no adverse health effects on donors are observed; although the concentrations of relevant blood components decrease slightly, they remain at a level sufficient for maintaining good health.
• There are even good reasons to believe that the health risk for donors decreases: Firstly, because they typically adopt a healthier lifestyle and, for example, abstain from excessive alcohol consumption and smoking, and secondly, because their blood is frequently and closely examined, allowing diseases to be detected early.

Secondly, the requirements for compensating the donor's expenses are very narrowly defined.

• Only actual expenses, such as a train ticket, may be compensated.
• For example, the donor's time loss during plasma collection and travel to and from the donation site, as well as the discomfort of the physical procedure, must not be compensated.
• The form of expense allowance practiced in Germany, with a fixed amount, would no longer be permitted.

Petra Netzel, as appeared in Alpha1 Journal 2/2023.

Therefore, the reopening of the Haema donation center in Brandenburg an der Havel on November 15, 2023, following its relocation, was a very special and important event. Rüdiger Zerbe and I, Petra Netzel, were privileged to participate as patient representatives from Alpha1 Germany e.V. We are both also members of the Berlin-Brandenburg self-help group. The welcoming remarks and introductions of the many guests were given by Haema board members Dr. José Rivero and Frank Pilgram, Dr. Nancy Kelle, and Britta Diebel, Haema's press officer.

I was particularly impressed by the welcoming remarks from Dr. Antje Töpfer, State Secretary in the Ministry for Social Affairs, Health, Integration and Consumer Protection of the State of Brandenburg, at the reopening of the Haema blood and plasma donation center. She spoke comprehensively and insightfully about the vital importance of Haema's presence at this location. She acknowledged the great responsibility of all employees and expressed her gratitude and appreciation to the Haema team for their dedication.

The welcoming remarks from Stefan Scheller, Mayor of Brandenburg, were equally heartfelt. They expressed gratitude for what had been achieved while also looking to the future. The reopening of the Haema donation center is a valuable addition to the city of Brandenburg.

According to the agenda, the group toured the center and met some of the donors. This gave plasma donors and recipients the opportunity to talk. The center's rooms are spacious, bright, and very modern. It was clear that the staff enjoyed their work there.
The open discussions with the guests were varied and interesting. Britta Diebel and her team were always available to answer questions. All in all, it was an informative and superbly organized day together at Haema. A wonderful, delicious snack was provided. Afterwards, we focused on the informational discussions between donors and us Alphas. Britta Diebel's words: "We are building a bridge between plasma donors and recipients." Those are the right words, in my opinion, and that's how we got started.

Rüdiger and I immediately went to the donors, greeted them, and introduced ourselves. The exchange was fascinating, friendly, and emotional. The plasma donors knew that plasma cannot be artificially produced, but they themselves had never had personal contact with a sick person who depends on it. The fact that this yellow fluid is so valuable to us Alpha-1 patients and other patients, and that without plasma our lives might end sooner, was new and shocking for the donors. It was very moving to feel how close you suddenly are to the donor.

For your information, 30,000 blood and plasma donations are collected annually at Haema in Brandenburg an der Havel! One of these donations came from Enrico Weiß, 36, who donated plasma for the 511th time on this special day. He received an award from the donation center, and we congratulated him warmly. I had the pleasure of meeting him. He donates blood and plasma, as do his wife and 18-year-old son. The family is aware that this is an easy way to help others. However, he had never before had personal contact with someone who so desperately needs plasma for their life. He was visibly moved by my story and the explanation of the Alpha-1 Antitrypsin Deficiency. Of course, I informed him about what we, as affected individuals, can do for ourselves and that we receive help and support through our association, Alpha1, and the self-help group. For me, the most important thing that day was being able to express my heartfelt and immense gratitude to the donors.

The entire Haema team deserves thanks and recognition for their work at the blood and plasma donation center. They are responsible for the further processing of the donations, ensuring that they reach the places where blood and plasma-based medications are urgently needed: clinics, hospitals, doctors' offices, etc.

We owe our participation in such an important Haema event and the opportunity to interact directly with donors to Britta Diebel. She gave us the chance to act as a mediator and shed light on the situation. The shared experience was invaluable and we would gladly repeat it.

Patrick Straub, ultrabold GmbH, as published in Alpha1 Journal 2/2022.

Plasma is a precious resource, vital for many people. A report produced by Alpha1 Germany now examines the importance of plasma donations and tells the moving story of Heike Isensee and Lothar Seiler. Heike, an Alpha-1 patient, relies on plasma to produce her life-saving medication, while her husband Lothar donates plasma regularly.

The report not only highlights the couple's personal experiences but also provides insights into the plasma donation process. Experts such as Dr. Rupp, a specialist in pulmonology at the Pneumology Practice in Stuttgart, and Sylvia Schafflik, head of the Heidelberg Plasma Center, share their perspectives. Together, they convey an understanding of the importance of plasma donation and illustrate the impressive journey of plasma from donor to the production of a life-saving medication.

But what exactly is plasma and why is it so crucial? Plasma is the liquid part of human blood, consisting of water, proteins, and essential nutrients. It performs vital functions in the human body. Furthermore, plasma contains antibodies and clotting factors that are essential in the treatment of serious illnesses, burns, and blood clotting disorders.

Plasma donations are essential, especially for people with diabetes. Thanks to the production of medications from plasma, they can receive life-saving therapy.

Given the immense importance of plasma donations, we would like to encourage you to spread the word about this valuable act. Anyone who is healthy and meets certain criteria can be a potential donor. Plasma donation is a simple and largely painless process in which blood is passed through a special machine that collects the plasma and returns the remaining components.

Our report on the importance of plasma donation is a call to action. It reminds us that we all have the opportunity to help others and save lives. Join the movement and inform your friends, family, and colleagues about the importance of plasma donation. Together we can make a difference! Because a small prick can mean a big difference in someone's life.

Gabi Niethammer, 2nd Chairwoman Alpha1 Germany e. V.

Did you know that approximately 15,000 blood donations are needed every single day(!) to meet the demand for blood products in Germany? Most people know someone who has needed a blood transfusion at some point in their life and may even have survived thanks to it. However, not everyone knows that in addition to donating blood, some locations also offer the option of voluntarily donating blood plasma.

Plasma-derived medications are used to treat genetic, life-threatening diseases. These include, among others, the well-known blood clotting disorder hemophilia, chronic inflammatory demyelinating polyneuropathy, and also alpha-1 antitrypsin deficiency.

Approximately 900 plasma donations are needed to cover the annual medication requirements of one person with AATD. We Alphas are so grateful that so many people are willing to donate time and time again, ensuring our needs are well met.

To mark its 20th anniversary, the disease Alpha-1 Antitrypsin Deficiency (AATD) was the focus of a donor appreciation event, celebrations, and patient information sessions. Both donors and those affected by AATD were invited. It was a pleasure for everyone to exchange ideas, learn more about the disease, and finally be able to express their gratitude in person.

Our member, Ms. Hannelore Sistu, who was on-site for us in Berlin-Tegel, reported: „It was a very pleasant visit. I received a very warm welcome, and my initial shyness quickly disappeared. After I was introduced to everyone, the tour began, which was very interesting. I had the opportunity to speak with two donors and thank them most sincerely on behalf of everyone. One gentleman has been donating regularly for ten years and has thus already donated 400 times. A young woman also comes to donate regularly. She was very touched that I thanked her personally.“

In Jena, Axel Röhming and his son Mika expressed their gratitude. In an interview, Mika stated: "In the future, the plasma will essentially provide me with the proteins that I am unable to produce myself, thus supplying me with natural proteins and hopefully enabling me to lead a normal life."„
The Röhming family even made it onto Jena TV, thereby raising awareness of our illness and calling for donations.

A heartfelt thank you to everyone who needs substitution therapy and depends on donations.

Further Haema/Plasmavita events in Stuttgart, Erfurt and Frankfurt were unfortunately cancelled or postponed due to the pandemic; Alpha1 Germany would have gladly accepted the invitation to these events as well.

Marion Wilkens, Chairwoman Alpha1 Germany eV.

Last year, together with other patient organizations and the German Association of Self-Help Groups (BAG Selbsthilfe), we advocated for a safe supply of plasma products. As previously reported, we sent a letter to the government, among other things. We have now received a reply from Prof. Dr. Claudia Schmidtke, who welcomes the strengthening of plasma donation and forwarded our letter to the Federal Ministry of Health (BMG) for review. On May 17th, we received the following response from Dr. Dagmar Dörmann of the BMG: While no decline in donations is anticipated in Germany, the dependence on other continents (especially America) could lead to a delayed impact (approximately one year) on the German market.

Much of what was mentioned in the reply was already familiar to us from a lecture, which we would now like to summarize in our own words: Transcript of a presentation on plasma given by Dr. Anneliese Hilger, Head of the Department of Hematology and Transfusion Medicine at the Paul Ehrlich Institute, Langen, as part of the InFusion event ‚Rare Diseases Forum‘. The event was moderated by Dr. Eckart von Hirschhausen, and representatives from, among others, the patient organization dsai (for congenital immunodeficiencies), which pointed out existing supply problems in its field, were also present. Dr. Hilger began her presentation with the question: What data is available on the supply situation?

All subsequent data can be found at the Paul Ehrlich Institute..

• The combined volume of blood and plasma donations has declined slightly over the past five years. Plasma donations alone have remained constant. The slight decrease has been in blood donations. This can be explained, among other things, by more economical use of blood products and the development of new guidelines for their use.
• Plasma is less frequently obtained from whole blood donations, but more often from apheresis (colloquially: blood purification).
• Approximately three million liters of plasma have been collected annually in Germany over the last ten years.
• Across Europe, almost seven million liters were produced in total => Germany therefore accounts for the majority share.
• Global: The USA has collected more than twice as much as Europe.
• The example of immunoglobulins shows that in recent years, a steadily increasing amount of plasma-derived product has been introduced to the German market (as was the case in 2020).

Since initial concerns about a shortage due to the pandemic were shared, the Paul Ehrlich Institute (PEI) convened a roundtable on plasma supply in December 2020 (PEI, industry, Federal Ministry of Health (BMG), patient representatives, state authorities, and many others). Dr. Hilger summarized the outcome as follows:

The industry's anticipated shortage of plasma products and its concern that reserves would be insufficient to compensate for fluctuations in supply could not be substantiated with reliable data (PEI). There was agreement that plasma collection in Europe needs to be strengthened. Three possible measures for improvement were also discussed: a public appeal for blood and plasma donations (Federal Centre for Health Education), compensation for expenses, and more collection sites.

Dr. Hilger summarizes: Despite a stable system for blood and plasma collection in Germany, and even though no data indicates a supply shortage, the system has weaknesses. For example, local and seasonal fluctuations are not captured, and complex factors (such as future industry planning) cannot currently be represented; therefore, it is impossible to predict the future.

No one can say for sure whether the supply of plasma in Germany will be sufficient in the future, but Dr. Hilger believes it will be.

Alpha1 Germany eV, as published in Alpha1 Journal 2/2022.

„"Such a donation takes approximately 45 minutes and can be made by the donor twice a week or 60 times a year."“

As part of International Plasma Awareness Week, Professor Rembert Koczulla (Head Physician at the Center for Pneumology at the Schön Clinic Berchtesgadener Land) was invited to the Haema Center Tegel on October 8, 2022, for a meet and greet with donors. The dialogue was to be enriched by a patient's perspective, and so I, as Deputy Group Leader of the Alpha1 Berlin-Brandenburg Self-Help Group, was able to participate in this event.

Upon arriving at the blood and plasma donation center, my husband and I were warmly greeted by Ms. Britta Diebel, Head of Communications for Haema AG. The atmosphere was almost homely, with coffee and cake ready and the Haema team kindly answering my questions about the schedule for the next few hours. The upcoming donor recognition ceremony was intended as an expression of gratitude to the many plasma donors, emphasizing once again the importance of plasma donations and that lives can only be saved through voluntary plasma donations.

It was organized so that we could watch two donors during their donation and ask them questions. The female donor had donated plasma 161 times and the male donor 565 times. I was fascinated by the process of how plasma is collected. Of course, I wanted to know how the machine worked, and Ms. Diebel explained the process to me in detail.

So, the donor's blood is fed into a small machine standing next to the donor and centrifuged there by the closed system. This means the heavier blood cells are separated from the lighter plasma. The yellow, clear blood plasma flows into a connected container, and the remaining blood components flow back into the donor's body. Such a donation takes about 45 minutes and can be made twice a week, or 60 times a year. This plasma is medical "gold," as vital medicines are derived from it.

Professor Koczulla's address to the donors, his expression of gratitude for the numerous donations made so far, and his explanations of the necessity of the required plasma brought a deep sigh of relief to all participants. I, too, receive a plasma-based medication that extends my life. I suffer from Alpha-1 Antitrypsin Deficiency. Therefore, I am so grateful to all plasma donors, and I was pleased to express this gratitude, on behalf of our association Alpha1 Germany e.V. and our self-help group Alpha1 Berlin-Brandenburg, by thanking the two donors.

It was an emotional encounter with the donors. They themselves rarely meet patients who need this precious plasma to survive. Their words, "We are happy to help," deeply moved me.

Before the video, Professor Koczulla explained to me in detail what alpha-1 antitrypsin deficiency is, and I thanked him for that. Afterwards, I was able to make an appeal for plasma donations!

After this event, I researched blood and plasma donation online to find out more. The question arose whether this topic is taught in schools. Why is it given so little public attention? Have I simply overlooked it? The media currently discusses all sorts of topics, including the broad subject of medicine. But I hear very little about what we desperately need for our lives: blood and plasma donations. I hope and wish that this will change. Blood and plasma donation deserves a strong voice in the media.

Petra Netzel