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	<title>Transplantationsinfos für Alpha-1-Patienten | Alpha1 Deutschland</title>
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	<title>Transplantationsinfos für Alpha-1-Patienten | Alpha1 Deutschland</title>
	<link>https://alpha1-deutschland.org/en/themen/transplantation/</link>
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	<item>
		<title>Neue Leitlinie zur Nachsorge nach Lungentransplantation</title>
		<link>https://alpha1-deutschland.org/en/neue-leitlinie-zur-nachsorge-nach-lungentransplantation</link>
		
		<dc:creator><![CDATA[A1D-WebRedaktion]]></dc:creator>
		<pubDate>Sun, 04 Jan 2026 16:10:46 +0000</pubDate>
				<category><![CDATA[Allgemein]]></category>
		<category><![CDATA[Alpha1 & die Lunge]]></category>
		<category><![CDATA[Hintergrundwissen]]></category>
		<category><![CDATA[Transplantation]]></category>
		<guid ispermalink="false">https://alpha1-deutschland.org/?p=7016</guid>

					<description><![CDATA[<p>New Guideline for Follow-Up Care After Lung Transplantation: More Safety and Clear Recommendations for Patients. Good and regular follow-up care is crucial for people after a lung transplant. To help doctors and...</p>
<p>The post <a href="https://alpha1-deutschland.org/en/neue-leitlinie-zur-nachsorge-nach-lungentransplantation">Neue Leitlinie zur Nachsorge nach Lungentransplantation</a> appeared first on <a href="https://alpha1-deutschland.org/en">Ihr Online Portal für Mitglieder und Interessierte</a>.</p>
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										<content:encoded><![CDATA[<h1 style="font-weight: 400;"><span style="color: #004267;"><strong>New guideline for follow-up care after lung transplantation</strong></span></h1>
<h2 style="font-weight: 400;"><span style="color: #004267;"><strong>Greater safety and clear recommendations for patients</strong></span></h2>
<p style="font-weight: 400;">For people who have undergone lung transplantation, good and regular follow-up care is crucial. To provide doctors with the best possible support, a so-called [missing word - likely &quot;care plan&quot;] was launched worldwide for the first time in November 2025. <strong>S3 guideline on follow-up care for adult lung transplant recipients</strong> published.</p>
<p style="font-weight: 400;">This guideline was developed under the leadership of <strong>German Society for Pneumology and Respiratory Medicine (DGP)</strong>Developed jointly with other professional societies from Germany, Austria, and Switzerland, it summarizes the current state of scientific knowledge and provides clear recommendations on how medical care should be provided after a lung transplant.</p>
<p style="font-weight: 400;">The focus is on a <strong>structured follow-up plan</strong>. It describes,</p>
<ul style="font-weight: 400;">
<li>which examinations are important after transplantation,</li>
<li>how often checks should take place (e.g. frequent at first, later at longer intervals),</li>
<li>and how possible complications can be detected early.</li>
</ul>
<p style="font-weight: 400;">The aim of the guideline is to... <strong>Long-term health and quality of life</strong> to improve the care of lung transplant patients and to ensure the most uniform, high-quality care possible.</p>
<p style="font-weight: 400;"><strong>Regarding the DGP press release:</strong><br />
<a href="https://pneumologie.de/aktuelles-service/presse/pressemitteilungen/weltpremiere-erste-s3-leitlinie-zur-nachsorge-bei-lungentransplantation-bietet-klare-orientierung-fuer-fachaerztinnen-und-aerzte">World premiere: First S3 guideline on aftercare following lung transplantation</a></p>
<p style="font-weight: 400;"><strong>Regarding the guideline (long version):</strong><br />
<a href="https://328508.seu2.cleverreach.com/c/112905653/1c616b9eaa5-t6qq58">› S3 guideline DACH guideline: Follow-up care of adults after lung transplantation in the AWMF guideline register</a></p>
<p style="font-weight: 400;">03.01.2026</p><p>The post <a href="https://alpha1-deutschland.org/en/neue-leitlinie-zur-nachsorge-nach-lungentransplantation">Neue Leitlinie zur Nachsorge nach Lungentransplantation</a> appeared first on <a href="https://alpha1-deutschland.org/en">Ihr Online Portal für Mitglieder und Interessierte</a>.</p>
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		<title>4. Tag zu Organspende und Transplantation, 18.11.23 in Essen</title>
		<link>https://alpha1-deutschland.org/en/4-tag-zu-organspende-und-transplantation-18-11-23-in-essen</link>
		
		<dc:creator><![CDATA[Thomas Heimann]]></dc:creator>
		<pubDate>Wed, 22 Nov 2023 15:01:45 +0000</pubDate>
				<category><![CDATA[Allgemein]]></category>
		<category><![CDATA[SHG Münster]]></category>
		<category><![CDATA[Transplantation]]></category>
		<category><![CDATA[Veranstaltungsberichte]]></category>
		<guid ispermalink="false">https://alpha1-deutschland.org/?p=5699</guid>

					<description><![CDATA[<p>This year, 2023, Alpha1 Germany was again represented at the 4th Organ Donation and Transplantation Day at the Essen Teaching and Learning Center. As in 2022, we were led by our group leader...</p>
<p>The post <a href="https://alpha1-deutschland.org/en/4-tag-zu-organspende-und-transplantation-18-11-23-in-essen">4. Tag zu Organspende und Transplantation, 18.11.23 in Essen</a> appeared first on <a href="https://alpha1-deutschland.org/en">Ihr Online Portal für Mitglieder und Interessierte</a>.</p>
]]></description>
										<content:encoded><![CDATA[<p style="font-weight: 400;">This year, 2023, Alpha1 Germany was also represented at the 4th Day on Organ Donation and Transplantation at the Teaching and Learning Center in Essen.</p>
<p style="font-weight: 400;">As in 2022, we were represented by our group leader from the SHG Münsterland, Heinz Dohmen, and his wife Christiane. We were able to set up our stand quickly (see pictures).</p>
<p style="font-weight: 400;"><img fetchpriority="high" decoding="async" class="alignnone size-medium wp-image-5700" src="https://alpha1-deutschland.org/wp-content/uploads/FEE4C537-4EDB-4DF8-9699-2377D419C384_1_105_c-300x225.jpeg" alt="" width="300" height="225" srcset="https://alpha1-deutschland.org/wp-content/uploads/FEE4C537-4EDB-4DF8-9699-2377D419C384_1_105_c-300x225.jpeg 300w, https://alpha1-deutschland.org/wp-content/uploads/FEE4C537-4EDB-4DF8-9699-2377D419C384_1_105_c-768x576.jpeg 768w, https://alpha1-deutschland.org/wp-content/uploads/FEE4C537-4EDB-4DF8-9699-2377D419C384_1_105_c.jpeg 1024w" sizes="(max-width: 300px) 100vw, 300px" /></p>
<p style="font-weight: 400;">For the first time, the event was led solely by the WZO Patient Advisory Board.</p>
<p style="font-weight: 400;">The aim of this event is to provide information and opportunities for exchange for patients and their families before and after transplantation. And this aim was achieved in every respect.</p>
<p style="font-weight: 400;">Excellent lecturers who took the time to answer all questions from the audience after their presentations. Simply top-notch!</p>
<p style="font-weight: 400;">The nice thing was that we also met members from other self-help groups of Alpha1 Germany and were able to exchange ideas during the breaks.</p>
<p style="font-weight: 400;">Even from our self-help group, two members, Ute and Marlies, who are about to be listed, were at this event with their husbands (see picture).</p>
<p><img decoding="async" class="alignnone size-medium wp-image-5701" src="https://alpha1-deutschland.org/wp-content/uploads/C8091725-EEC6-4344-BDF4-A447C4EE4AED_1_105_c-300x225.jpeg" alt="" width="300" height="225" srcset="https://alpha1-deutschland.org/wp-content/uploads/C8091725-EEC6-4344-BDF4-A447C4EE4AED_1_105_c-300x225.jpeg 300w, https://alpha1-deutschland.org/wp-content/uploads/C8091725-EEC6-4344-BDF4-A447C4EE4AED_1_105_c-768x576.jpeg 768w, https://alpha1-deutschland.org/wp-content/uploads/C8091725-EEC6-4344-BDF4-A447C4EE4AED_1_105_c.jpeg 1024w" sizes="(max-width: 300px) 100vw, 300px" /></p>
<p style="font-weight: 400;">Our conclusion – a complete success and should definitely be repeated in 2024!</p>
<p style="font-weight: 400;"><p>The post <a href="https://alpha1-deutschland.org/en/4-tag-zu-organspende-und-transplantation-18-11-23-in-essen">4. Tag zu Organspende und Transplantation, 18.11.23 in Essen</a> appeared first on <a href="https://alpha1-deutschland.org/en">Ihr Online Portal für Mitglieder und Interessierte</a>.</p>
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		<title>Erfahrungsbericht Lungentransplantation: Zehn Jahre voller Leid, Angst und Hoffnung</title>
		<link>https://alpha1-deutschland.org/en/erfahrungsbericht-lungentransplantation-zehn-jahre-voller-leid-angst-und-hoffnung</link>
		
		<dc:creator><![CDATA[Redaktion Alpha1 Deutschland e.V.]]></dc:creator>
		<pubDate>Mon, 11 Jan 2021 12:28:19 +0000</pubDate>
				<category><![CDATA[Allgemein]]></category>
		<category><![CDATA[Transplantation]]></category>
		<guid ispermalink="false">https://www.alpha1-deutschland.org/?p=4316</guid>

					<description><![CDATA[<p>The post <a href="https://alpha1-deutschland.org/en/erfahrungsbericht-lungentransplantation-zehn-jahre-voller-leid-angst-und-hoffnung">Erfahrungsbericht Lungentransplantation: Zehn Jahre voller Leid, Angst und Hoffnung</a> appeared first on <a href="https://alpha1-deutschland.org/en">Ihr Online Portal für Mitglieder und Interessierte</a>.</p>
]]></description>
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	<h1><span style="color: #004267;">Alpha-1 antitrypsin deficiency, COPD and a lung transplant – ten years full of suffering, fear and hope</span></h1>
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	<p style="font-weight: 400;">Hauke Frischmann</p>
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	<p>Jürgen Frischmann was 48 years old when, in the spring of 2010, he embarked on the long journey from Wiesbaden to the North Sea island of Föhr to begin a pulmonary rehabilitation program in Utersum. He had no idea yet of what the next ten years would bring and how drastically his life would soon change.</p>
<p>A year earlier, he had still participated in sports competitions, regularly went to the swimming pool, cycled, and jogged through the woods. He noticed that he often had difficulty breathing and quickly became winded when climbing stairs, but he dismissed it, just like his pulmonologist, as a consequence of his years of smoking and tried to cope as best he could. Even the COPD diagnosis didn&#039;t change anything initially.</p>
<p>His condition deteriorated drastically during the car ride to the rehabilitation clinic, and his initially mild infection increasingly troubled him. He had just arrived in Utersum when he collapsed with severe shortness of breath and had to spend the next four days in the hospital in Wyk. After his return to the rehabilitation clinic, the doctors there decided to take a blood sample and shortly thereafter diagnosed him with alpha-1 antitrypsin deficiency, which was confirmed a short time later by the Alpha-1 Center at the Mainz University Hospital.</p>
<p>To slow the progression of his COPD – which had already reached stage IV – he began participating in the pulmonary exercise program of the German Patient League for Respiratory Diseases in Wiesbaden, consistently followed his medication plan, and kept himself informed about new developments and possible treatment options through informational events and support groups. Although this allowed him to maintain some of his quality of life, his condition predictably continued to deteriorate until, in 2016, he decided to put himself on the waiting list for a lung transplant.</p>
<p>The initial examinations took place at the Mainz University Hospital and were evaluated in Giessen. There, Jürgen Frischmann learned about the possibility of bronchoscopic lung volume reduction using valves, which can help reduce lung overinflation in cases of severe emphysema and COPD. After further examinations necessary for this treatment and a detailed consultation, he considered this option and shortly thereafter had three valves implanted at the Thorax Clinic in Heidelberg. However, since no positive effect occurred even after a six-month waiting period, the treatment was discontinued.</p>
<p>In 2018, he presented himself again at the University Hospital in Giessen and underwent all the extensive examinations necessary for lung transplantation for the second time. A few months later, he finally received the long-awaited letter, in which he read with relief: „…we have registered you with Eurotransplant for organ transplantation via the Giessen Transplant Center…“.</p>
<p>The following two years were by far the most difficult he had endured since his diagnosis. Although he continued to actively participate in all the self-help group activities and events and was very involved as vice-chairman of the DPLA (German Association for People with Lived Experiences), his severe health limitations forced him to withdraw more and more from social life. Now reliant on a walker and increasingly on an electric wheelchair, he could no longer move around as freely as before and depended more and more on assistance. He spent days and weeks in the hospital more and more frequently due to acute respiratory distress, which ultimately forced him to give up his job. His radius of movement became smaller and his activities more and more restricted. With each hospital stay and each setback, his zest for life diminished a little more, but he didn&#039;t give up. Although he was aware of the hopelessness of his situation and increasingly felt the helplessness of this illness, he seized every opportunity to improve his circumstances and never stopped hoping for that one, life-changing phone call.</p>
<p>On the evening of June 10, 2020, the moment finally arrived! His phone rang, and shortly afterward, he was on his way to Giessen, where preparations for the surgery began immediately. Fear and excitement accompanied him until the early hours of the morning, before the long-awaited operation finally commenced. Over the next seven hours, the doctors removed his lung, which was now 58 years old, and transplanted a functioning one into it. He will always remember this night! As will the moment he awoke from the anesthesia and consciously breathed with his new lung for the first time.</p>
<p>He did relatively well for the first two days after surgery, but on the third day, the first complications appeared: fluid retention in his feet, diabetes, and a pulmonary embolism. A week later, he overcame these challenges and was discharged from the intensive care unit. Over the next eight weeks, he began a slow mobilization and initial rehabilitation program, which, however, progressed very cautiously due to his significant loss of muscle mass and weight. After a total of 53 days, he was finally able to leave the hospital and go home.</p>
<p>Although he is still not fully mobile and will continue to face some challenges, he draws a rather positive conclusion:</p>
<p>„&quot;So, I&#039;ve now had a transplant and am fortunate enough to have a precious new lung. Now it&#039;s up to me how quickly I recover and regain my strength. I have to take care of the new organ and recognize any warning signs. Adherence to the prescribed therapy is extremely important, which requires a lot of discipline. All in all, it was a long but ultimately worthwhile journey.&quot; (Jürgen Frischmann, October 2020)</p>
<p><em>Hauke Frischmann, together with Jürgen Frischmann, compiled this moving account from various articles that appeared in the &quot;Luftpost&quot; (Airmail).</em></p>
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	<p>Organ and tissue donation is solidarity in action. Even though confronting topics like illness and death requires overcoming obstacles for most people, answering the question of whether one wants to donate organs is crucial. For many people waiting for an organ transplant, it&#039;s a matter of life or death. And you yourself could find yourself in a situation where you need an organ or tissue donation at any time due to an accident or illness. Therefore, it&#039;s important that as many people as possible consider this issue.</p>
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</div></div><p>The post <a href="https://alpha1-deutschland.org/en/erfahrungsbericht-lungentransplantation-zehn-jahre-voller-leid-angst-und-hoffnung">Erfahrungsbericht Lungentransplantation: Zehn Jahre voller Leid, Angst und Hoffnung</a> appeared first on <a href="https://alpha1-deutschland.org/en">Ihr Online Portal für Mitglieder und Interessierte</a>.</p>
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		<title>Die Regionalgruppe Niedersachsen des Bundesverbandes der Organtransplantierten bdo e.V. stellt sich vor</title>
		<link>https://alpha1-deutschland.org/en/die-regionalgruppe-niedersachsen-des-bundesverbandes-der-organtransplantierten-bdo-e-v-stellt-sich-vor</link>
		
		<dc:creator><![CDATA[Redaktion Alpha1 Deutschland e.V.]]></dc:creator>
		<pubDate>Fri, 27 Sep 2019 13:01:43 +0000</pubDate>
				<category><![CDATA[Allgemein]]></category>
		<category><![CDATA[Transplantation]]></category>
		<guid ispermalink="false">https://www.alpha1-deutschland.org/?p=3132</guid>

					<description><![CDATA[<p>The post <a href="https://alpha1-deutschland.org/en/die-regionalgruppe-niedersachsen-des-bundesverbandes-der-organtransplantierten-bdo-e-v-stellt-sich-vor">Die Regionalgruppe Niedersachsen des Bundesverbandes der Organtransplantierten bdo e.V. stellt sich vor</a> appeared first on <a href="https://alpha1-deutschland.org/en">Ihr Online Portal für Mitglieder und Interessierte</a>.</p>
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	<h1 class="cmsms_post_title entry-title"><span style="color: #004267;">The Lower Saxony regional group of the Federal Association of Organ Transplant Recipients (bdo eV) introduces itself</span></h1>
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	<p style="text-align: left;"><strong>Thorsten Huwe</strong></p>
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	<p>The uncertainty during the waiting period for a donor organ is often stressful, especially when one feels alone with the associated problems.</p>
<p>Even after a transplant, life needs to be reorganized to achieve the ultimate goal – the long-term preservation of the donor organ. In the Lower Saxony regional group of the Federal Association of Organ Transplant Recipients (bdo e.V.), you have the opportunity to talk about your worries and fears, so that you can better cope with the treatment process, even during challenging times. Four times a year, the group aims to foster the exchange of ideas among its members and also provides information on medical topics of interest to all transplant recipients.</p>
<p>About me – my name is Thorsten Huwe, I was born in 1965, am married, and have three children. I come from the Celle district and have a house there where we all often gather. I became involved with organ donation and the German Federal Association of Organ Transplant Recipients (BDO) through my daughter Luisa, who herself was waiting for a heart transplant and received a donor heart on April 13, 2019, after seven weeks on the high-urgency list. Thanks to Hannover Medical School! A seminar for relatives led me to the decision to learn more about organ donation.<br />
I am passionate about facilitating an exchange among those affected, exploring their worries and fears, but also the hopes that arise from them. I want to bring people together to show them that they are not alone. Our next meetings will take place on September 14, 2019, for a hike (location and time to be announced) and on November 30, 2019, at the Hannover Medical School (MHH).</p>
<p>That&#039;s what I&#039;m committed to.</p>
<p>Best regards, Thorsten Huwe<br />
Contact: thorsten.huwe@bdo-ev.de</p>
<p><a href="https://alpha1-deutschland.org/en/alpha1-journal/">Published in Alpha1 Journal 1-2019.</a></p>
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</div></div><p>The post <a href="https://alpha1-deutschland.org/en/die-regionalgruppe-niedersachsen-des-bundesverbandes-der-organtransplantierten-bdo-e-v-stellt-sich-vor">Die Regionalgruppe Niedersachsen des Bundesverbandes der Organtransplantierten bdo e.V. stellt sich vor</a> appeared first on <a href="https://alpha1-deutschland.org/en">Ihr Online Portal für Mitglieder und Interessierte</a>.</p>
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		<title>MHH-Presseinformation: Transportsystem für Spenderlungen nach MHH-Studie in USA zugelassen</title>
		<link>https://alpha1-deutschland.org/en/mhh-presseinformation-transportsystem-fuer-spenderlungen-nach-mhh-studie-in-usa-zugelassen</link>
		
		<dc:creator><![CDATA[Redaktion Alpha1 Deutschland e.V.]]></dc:creator>
		<pubDate>Fri, 13 Jul 2018 13:13:00 +0000</pubDate>
				<category><![CDATA[Allgemein]]></category>
		<category><![CDATA[Transplantation]]></category>
		<guid ispermalink="false">https://www.alpha1-deutschland.org/?p=2306</guid>

					<description><![CDATA[<p>The post <a href="https://alpha1-deutschland.org/en/mhh-presseinformation-transportsystem-fuer-spenderlungen-nach-mhh-studie-in-usa-zugelassen">MHH-Presseinformation: Transportsystem für Spenderlungen nach MHH-Studie in USA zugelassen</a> appeared first on <a href="https://alpha1-deutschland.org/en">Ihr Online Portal für Mitglieder und Interessierte</a>.</p>
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	<h1><span style="color: #004267;">MHH Press Release: Transport system for donor lungs approved in the USA following MHH study</span></h1>
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	<p>MHH Press and Public Relations<br />
<strong>Stefan Zorn</strong>, Director</p>
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	<p>Transport system for donor lungs approved in the USA following MHH study; study on organ care system for the lungs successful / American Food and Drug Administration (FDA) grants approval / publication in Lancet Respiratory Medicine</p>
<p>A large international research team led by physicians from Hannover Medical School (MHH) has demonstrated in the INSPIRE clinical trial that transporting and storing donor lungs in the Transmedics Organ Care System (OCS) is safe and effective compared to the current standard procedure of storing them at four degrees Celsius. Another clinical advantage: Patients who received an organ from the OCS experienced primary graft dysfunction less frequently, a common complication of refrigerated storage, which usually occurs within the first 72 hours. “This could mean that patients can be ventilated for a shorter time and discharged sooner,” says Professor Dr. Gregor Warnecke, senior consultant at the MHH Clinic for Cardiac, Thoracic, Transplant and Vascular Surgery (HTTG) and principal investigator of the study. Twenty-one transplant centers participated in the international study, with MHH treating the largest group of patients. The physicians published their findings in the journal “Lancet Respiratory Medicine.”.</p>
<p>Based on the results of the study, the United States Food and Drug Administration (FDA) already granted approval for the OCS for storing lungs for transplantation at the end of March.</p>
<h2><span style="color: #004267;">Advantages of the Organ Care System</span></h2>
<p>The OCS is a mobile device for ex vivo lung perfusion. Inside the device, the organ is transported at body temperature, perfused with a blood-like solution, and supplied with nutrients. The lungs are ventilated within the OCS, allowing them to oxygenate themselves. The device gives physicians up to twelve hours to transport the donor organ, assess lung function, and improve it: for example, by drying out fluid retention and suctioning mucus. &quot;This way, the organ reaches the recipient in a significantly better condition than with the previously standard cold storage,&quot; says Professor Warnecke. &quot;And the operations can also be planned more effectively – ultimately benefiting patient safety!&quot; Professor Dr. Axel Haverich, Director of the MHH Clinic for Cardiac, Thoracic, Transplant, and Vascular Surgery, adds: &quot;The number of organ donations in Germany is steadily declining. The OCS enables us to implant donor organs from more distant European countries here in Hanover – something that was previously impossible.&quot;“</p>
<p>The current standard method for transporting transplants at four degrees Celsius only gives transplant surgeons up to ten hours. During this time, the organ deteriorates continuously due to a lack of blood and nutrient supply, resulting in primary transplant dysfunction in up to 30 percent of patients after transplantation. This dysfunction leads to a decline in lung function and can ultimately be fatal.</p>
<p>Various aspects of the research and development of ex vivo lung perfusion were supported by the three major transplantation research consortia of the MHH: the Cluster of Excellence REBIRTH (From Regenerative Biology to Reconstructive Therapy), the German Center for Lung Research (DZL) and the Integrated Research and Treatment Center for Transplantation (IFB-Tx).<br />
Further information can be obtained from the MHH press office, telephone (0511) 532-6772.</p>
<p>A photo is attached. It shows Professor Dr. Axel Haverich, Director of the MHH Clinic for Cardiac, Thoracic, Transplant and Vascular Surgery, next to an OCS. You may use it free of charge in connection with this press release, provided you cite “MHH/Kaiser” as the source and send us a copy.</p>
<p>MHH Press and Public Relations<br />
Stefan Zorn, Head<br />
Telephone: 0511 532-6772, Fax: 0511 532-3852, <a href="mailto:pressestelle@mh-hannover.de">pressestelle@mh-hannover.de</a>, Carl-Neuberg-Straße 1, 30625 Hannover. Further information from the MHH can be obtained at [website address missing]. <a href="http://www.mh-hannover.de/">www.mh-hannover.de</a></p>
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</div></div><p>The post <a href="https://alpha1-deutschland.org/en/mhh-presseinformation-transportsystem-fuer-spenderlungen-nach-mhh-studie-in-usa-zugelassen">MHH-Presseinformation: Transportsystem für Spenderlungen nach MHH-Studie in USA zugelassen</a> appeared first on <a href="https://alpha1-deutschland.org/en">Ihr Online Portal für Mitglieder und Interessierte</a>.</p>
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