Each association and organization need a clear strategy.

[The] (…) paper aims to create a Breathe Vision for 2030, reflecting the changes that lung patients want to see in their lives. The importance of these changes is reflected in the impact that lung health has on our general health. Lung health, particularly in children, is such an important factor in our current health and in predicting our future health that attention for healthy lungs is crucial in improving the overall health of our population.

The original idea of building-up patient journeys for various rare lung diseases came up as a result of the collaboration between EURORDIS (https://www.eurordis.org/) and ERN-Lung (https://ern-lung.eu/). We have not developed such a material previously and thought that the strategic and analytical approach this initiative provides is beneficial for the whole PH patient community.

On the 18th of October 2016 a multi-stakeholder cross-condition meeting was held in the European Parliament in Brussels to discuss how to improve organ donation and transplantation across the EU, click here for full report. The EP event had an impressive media coverage, click here for the media report. HOW TO SUPPORT THE PHA EUROPE CAMPAIGN TO IMPROVE ORGAN DONATION AND TRANSPLANT ACROSS THE EU: Endorse The Call To Action Call to Action to improve Organ Donation and Transplantation across the EU – text with latest endorsements Encourage other organisations to endorse and support the campaign Spread the news and encourage other associations to participate. These can be: Your own affiliate organisations Other patient associations that may a have an interest in organ donation and transplantation Any other organization with a focus on public health issues, including health authorities, academia, research institutes, medical professional societies. Members of the European Parliament from your country Share the key messages from the European Parlament event Under construction Share the CtA video Add the PHAE Call to Action campaign logo to the home page of your website Post the campaign logo on your the home page of your website Add a hyperlink which takes you either to a dedicated page on your own website or to the PHA Europe website. Add the PHAE Call to Action campaign logo to your signature emails Check with your webmaster if the campaign logo can be added to your signature on e-mail correspondance. Support the PHAE campaign through your facebook and twitter social media channels Post news and logo of the campaign on your Facebook and Twitter channels Update these with any new developments or initiatives of your own association Share transplant patient stories or short videos (eg. Vines) from your own association Click “share” to PHA Europe Facebook posts on this topic, retweet or favorite any PHA Europe posts; In general share/retweet/favorite any news on the social media related to organ donation and transplant. Use the PHAE campaign hashtag #CALL4Transplant Whevever you mention the Call to Action and campaign on your website, in social media posts or other, always make sure you use the hashtag #CALL4Transplant, which has the double meaning of the Call to Action and the actual call for transplant which patients receive when the time for surgery has arrived. Support the campaign pledge Take a picture with the pledge and share it on your organizations’s social media channels. Send the photo to us at p.ferrari@phaeurope.org so we can also disseminate it. You can find the pledge in the appendix Talk about the campaign at your events When you are holding one of your organisations events, you might consider speaking about the campaign. At a conference you might wish to add a slide or two about the campaign to your presentation or poster (see appendix with campaign materials). Organize an event Depending on your possibilities/time/workload you may consider the possibility of organising an event to celebrate EODD. Regardless of how big or small your event, the important thing is to raise awareness of organ donation and transplantation. Consider media activity This can be done in conjunction with an event (see above). Or else, you can take advantage of the momentum that will be generated by the European Organ Donation Day on October 10 to send out a press release or just contact a few journalists to speak of the Call to Action and campaign. See template press release below. Inform us about what you are doing so that we can share this news Keep us informed of anything that is happening in your organization or country so that we can in turn share the news, tweet, retweet or favorite it on the PHAE website and social media channels. Translate the PHAE call ot action into other languages The Call to Action can be translated into other languages so that your affiliates and national organization can use it for advocacy or awareness activities locally. We will provide translations, please write to p.ferrari@phaeurope.org Merchandising The campaign logo can be used for T shirts, hats, pens, canvas bags and other merchandising items to use at events or for any other awareness raising activities. Logo, pledge, inforgraphic and other material The campaign logo can be used for T shirts, hats, pens, canvas bags and other merchandising items to use at events or for any other awareness raising activities. Call to Action pledge Campaign on Organ Donation and Transplantation across the EU – description Call to Action logo (pdf, jpg) Call to Action pledge Key facts about organ donation and transplantation Background documents Infographic Organ donation and transplantation in Europe – Infographic #Call4Transplant banner 1 Call to Action to improve Organ Donation and Transplantation across the EU – text with latest endorsements Spread the news and encourage other associations to participate. These can be: Your own affiliate organisations Other patient associations that may a have an interest in organ donation and transplantation Any other organization with a focus on public health issues, including health authorities, academia, research institutes, medical professional societies. Members of the European Parliament from your country Under construction https://www.youtube.com/watch?v=WMLszmo63GA Post the campaign logo on your the home page of your website Add a hyperlink which takes you either to a dedicated page on your own website or to the PHA Europe website. Check with your webmaster if the campaign logo can be added to your signature on e-mail correspondance. Post news and logo of the campaign on your Facebook and Twitter channels Update these with any new developments or initiatives of your own association Share transplant patient stories or short videos (eg. Vines) from your own association Click “share” to PHA Europe Facebook posts on this topic, retweet or favorite any PHA Europe posts; In general share/retweet/favorite any news on the social media related to organ donation and transplant. Whevever you mention the Call to Action and campaign on your website, in social media posts or other, always make sure you use the hashtag #CALL4Transplant, which has

The International PAH Patient and Carer Survey (IPCS) was conducted to provide new insights into the wider impact of pulmonary arterial hypertension (PAH) on patients and carers, beyond the clinical definition of the physical burden of the disease. Between 2010 and 2011, a total of 326 PAH patients and 129 carers across five European countries (France, Germany, Italy, Spain and the UK), replied to questionnaires asking about four main areas.

The European strategy for data proposed the establishment of domain-specific common European data spaces. The European Health Data Space (‘EHDS’) is the first proposal of such domain-specific common European data spaces. It will address health-specific challenges to electronic health data access and sharing, is one of the priorities of the European Commission in the area of health and will be an integral part of building a European Health Union.

In course of the advocacy work, PHA Europe is collaborating with many stakeholders, including but not limited to other non-governmental organizations, patient associations, consortia, scientific and professional associations, policy makers, decision making and health technology assessment bodies.

Please find below some useful links. You can find sources of information about PH associations, other non-profit organizations as well as authorities, scientific societies and clinical trial registries.

Directive 2011/24/EU of the European Parliament and of the Council of 9 March 2011 on the application of patients’ rights in cross-border healthcare.