DCFH - Deutsche CF-Hilfe e.V.
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Mission Statement
„Emotional, social and medical support and empowerment for people with cystic fibrosis and their relatives, always at eye level.
About This Cause
HOW IT BEGAN 2018 Foundation of the independent, non-profit patient organisation "DCFH - Deutsche CF-Hilfe". ACTIVITIES... ...to improve care ► Participation in expert discussions and congresses, for example, in the Bundestag on the topic of care for CF sufferers: https://docplayer.org/185468592-Verbesserung-der-versorgung-von-mukoviszidose-patienten-in-deutschland.html ► Telemedicine from the perspective of CF patients, lecture and discussion: https://www.dcfh.de/ehealth-nrw/, lecture: https://www.dcfh.de/ehealth-nrw/. ► Interview "Digital helpers in cystic fibrosis treatment": https://open.spotify.com/episode/5EJlIcTPsPQUjqIaMbf0ES ► Second German association under the European umbrella organisation CF Europe https://www.cf-europe.eu/members/ ...for the collection of knowledge and preparation for affected persons and relatives ► Membership in the ECFS https://www.ecfs.eu/ ► Participation in major international CF events (NACFC, ECFS, from 08.06.2022 again present in Rotterdam) ► Website https://dcfh.de with carefully selected, researched and summarised information for affected persons and relatives. ► Knowledge collection https://CFpedia.org according to the Wikimedia standard. ► Members of many CF teams emphasise the high topicality, compactness and precision of the information. ...for the individual support of CF-affected and their relatives. ► There is a wide range of conversations for all these groups of people. These conversations are used intensively, always ensuring patient confidentiality. ► Communication channels: audio, text, video (telephone, mail, SMS, teams, Zoom, WebEx, WhatsApp, Signal, Telegram, Threema, FB and Instagram Messenger) ► Social networks: Facebook (https://www.facebook.com/DCFHilfe), administration of 4 CF-related Facebook groups with a total of over 6,000 members, and Instagram (https://www.instagram.com/dcfh_e.v/) ► Newly CF patients and their relatives is given as much time as they need. Meetings are held primaril via video and can take hours if required. Often parents of newly diagnosed children are in a state of shock. We easily help them regain calm and hope, enabling them to create a family life that is supporting their child while feeling safe and secure. Doctors, including professors and physiotherapists and psychologists, support us - most of whom have many years of expertise in CF. We use this possibility above all in possible medical emergencies and under challenging constellations of people with advanced CF. We provide second opinions. People ask all the questions for which the CF team has far too little time. Some of these questions only come up days and weeks later, and perhaps you have already experienced this. ... with topical relevance Due to our initiative, people with CF all over Germany received the second-highest Sars/Covid 19 vaccination priority in February 2021. Many affected people and relatives had participated in our carefully planned "Do something" initiative. They sent their local constituency MPs a text prepared by us, including a detailed statement of the German CF-Hilfe: https://www.dcfh.de/tuwas2021_01/. The feedback from the members of the Bundestag, which also reached us directly, was surprising and overwhelming, mainly due to their high number. And for those affected, it was a powerful experience of self-efficacy! At the beginning of March 2022, we launched the most shared campaign so far (Facebook, Instagram, YouTube) from the CF community to provide emergency support for people fleeing Ukraine with therapy-intensive respiratory diseases: https://youtu.be/MaloDqY9liQ. YOU CAN HELP US! Donate to: DCFH - Deutsche CF-Hilfe e.V., IBAN: DE84 4401 0046 0389 2724 64 (Postbank) or PayPal https://www.paypal.com/donate/?hosted_button_id=HGSKKD749QDM2