20th anniversary of the association – a look back

Do you know this feeling? Wake up in the morning, maybe it smells like coffee, maybe breakfast is already ready and someone gives a bouquet of flowers or a first gift – someone calls and congratulates, a serenade at work or among friends and at the end of the day a nice, big one Celebrate with … stop! It’s February, it’s the year 2021 and the corona pandemic still has a firm grip on our country and the world. The first lockdown was decided almost a year ago and it is very likely that you have already experienced it: It is your birthday in the pandemic .

Our association Aplastic Anemia & PNH eV also celebrated its birthday last week, namely its 20th anniversary. For known reasons, however, there was no question of “celebrating” in this context – even if we did not give up hope of being able to make up for it one day. Until then, however, we don’t want to simply skip the club’s anniversary: It’s a wonderful opportunity to review the past 20 years. Perhaps you have been with us from the start, perhaps you only became aware of the association a few weeks ago: We are very pleased that you are part of it, we would like to thank you for your interest, your questions and suggestions, and we would like to take a look back at you invite you to 20 years of AA & PNH eV.

The association was founded on February 16, 2001 initially for a sad, very personal reason: Judith Hermanns, a young woman of just 30 years of age, died in December 2000 after years of fighting aplastic anemia. Some time later, eight grieving friends founded the association Aplastische Anemia eV (PNH was included in the association name in 2018) under the motto “Never give up!”: They dedicated the association to their friend Judith and made it their goal to To provide information about aplastic anemia, to provide a point of contact for those seeking help and to help ensure that research into newer, better therapeutic options never stops. How can an association achieve this? This question had to be answered in the first few years after the foundation:

It became the club’s first important task when To serve as a contact person for people with AA or PNH: Perhaps you suffer from one of these diseases yourself and still remember the many questions that were associated with this diagnosis at the beginning (but also during the course) of your disease: What is anemia, what is it hemoglobinuria? What does the bone marrow actually do? And – above all – what does it all mean for me? To clarify all of these and many other questions, the AA & PNH eV association began organizing lectures and information evenings at a local level early on; A website and a detailed, repeatedly revised information brochure were created. If, despite all this, something remains unclear, the association will help in direct and personal contact.

In order to stay up to date with the current state of science and to be able to share important research results with all interested parties, it is important to Further education : For this reason, the board members of the association take part in Germany-wide conferences and training courses from the very beginning, at which, for example, studies on new therapy methods or other relevant findings for AA / PNH sufferers are presented. This includes the annual patient congress of the German Leukemia & Lymphoma Aid (which not only deals with leukemia and lymphoma, but also other blood diseases), at which the AA & PNH eV association has been represented for years. The quintessence of the findings and possible innovations will be shared on the website in blog format or in the newsletter with all patients, relatives and interested parties.

Another important task of the association is the representation of political interests . In the first few years after the association was founded, various committees (e.g. the IQWiG , the Institute for Quality and Efficiency in Health Care) advocate that the perspective of the AA / PNH be included in various resolutions, for example letters of recommendation or evaluations of therapy methods, is included. Board members have been taking part in meetings of the G-BA (joint federal committee) since 2017 and represent the interests of AA / PNH patients, for example with regard to the assessment of the additional benefit of a drug. In addition, the association has been present at numerous events such as Rare Diseases Day for years: through information stands, workshops and seminars, the association helps to draw more public attention to these two diseases.

Another focus of the association’s work is helping to find the right treatment person: On the website, the association publishes an overview of the hematologists, doctors and medical centers throughout Germany, Austria and Switzerland who specialize in AA and PNH.

The networking of AA / PNH patients with each other is also one of the areas of responsibility of the association: Everyone goes their own way, but it can be helpful to let each other share their own experiences, or to give each other a little from time to time To give consolation. In 2009, the first local association of AA / PNH patients was established with the Rhine-Main regional group. Since then, three more (NRW plus , Nord, Ost) have been added: The regional networking enables several times a year to meet in person to discuss everyday difficulties, both large and small, with the disease – but above all, mutual encouragement and support.

The last year then meant a big change for all of us: The SARS-CoV-2 virus spread rapidly and brought with it countless worries, restrictions and questions. This was and is especially true for patients with chronic diseases such as AA or PNH, who suddenly found themselves exposed to many uncertainties about their general safety, their risk in the event of an infection and, more recently, about vaccinations. For a year now, the association has endeavored to provide the most important practical information and recommendations on the subject of Corona based on the latest scientific knowledge. The association will continue to support you in the coming months with all your worries and questions, until one day this pandemic will hopefully be over.

20 years have passed since the day the association was founded and we look back on a time in which all these tasks were approached, performed, reconsidered and expanded more intensively from year to year. We would like to thank everyone who has volunteered in the work of the association since 2001 and who made it possible for us to celebrate this anniversary – thank you very much!

AA and PNH may be rare diseases, but it is all the more important that those affected, relatives and interested parties are given a space for questions and exchange. We are grateful for every support that we have received on our way and we wish to be able to continue on this path for (at least) another 20 years. We would be happy if you continued to accompany us and maybe even support us. All the best – never give up!