Alpha1 Journal Issue 2/2019
Our group leader meeting in Leipzig
This issue contains:
- Reflex respiratory therapy for pulmonary emphysema
- Smart patients ask their doctor or pharmacist
- Survey results: Alpha-1 & Cancer
- The chronicle of the self-help group Saxony & Saxony-Anhalt
- Alpha1 on the move: Hattingen, Hamburg, Frankfurt & Co.
Download the journal as a PDF:
In this issue
Foreword 03
Service: Board of Directors, contact telephone, advisory board, scientific advisory board 06
Featured: Patient Library: Patient Journal Respiratory Tract and Lungs 08
Documented for you
Impressions from the group leader meeting in Leipzig: 3 days of a "full program" 09
Plasma donation process 12
Our group leader meeting: Internal topics and call for entries 13
Patient history: The long lead-up to substitution therapy 14
Miscellaneous:
Introduction: The Pulmonary Exercise Handbook 16
Reflexive respiratory therapy (RAT) for pulmonary emphysema 16
Enjoy candlelight even with A1ATM – here's a better way 19
Announcements: Information Day 2020, Children & Youth Day 2020, Anniversary 2021
Alpha-1 & the psyche: Smart patients ask their doctor or pharmacist 22
A note from us:
GDPR in our club 24
Survey results: Alpha-1 and cancer 25
Do people with alpha-1 antitrypsin deficiency have a lower susceptibility to developing cancer? 26
From the self-help groups (SHG)
Self-help group leaders are finding it difficult to find successors, according to reports from many groups – but not in ours! 27
The severely disabled person's ID card offers many advantages 28
July 2019: Camino de Santiago hike from Cologne to Trier 29
Patient event CSL Behring on September 21, 2019 30
The chronicle of the SHG Saxony and Saxony-Anhalt 31
Remembrance 33
Alpha Kids & Alpha Teens: The Children's Network 34
Letters to the editor
Impressions from the patient hiking day „My breath, my path“ 34
My breath, my path in Lüneburg 35
My rehab in 2019 in Schönau 36
Alpha1 on the move
12th Lung Symposium in Hattingen – we were there! 37
Presentation of the SHG Hamburg at the information mile in Altona 38
Alpha1 workshop in Frankfurt November 4, 2019 38
Annual closing meeting of the SHG Hamburg 39
Alpha1 On the Road 40
Report on the experiences of the TIGEM Alpha-1 Research Conference 42
A word about finances 43
Advertising in Alpha1 Journal 45
Thanks to all sponsors and Imprint 46
Declaration of accession 47