Our Foundation is grounded on a project-based philosophy. We will work on up to five projects at a time, and individual or institutional contributors may choose which project(s) to support. We are aiming to complete all projects on time and within budgets. The choice of the project portfolio comes after an intense discussion of the Foundation with the HCM community and the scientific board. Our goal for each project is simple: to provide tools and initiatives which will improve the lives of HCM patients, will increase the visibility of the disease and its consequences with key stakeholders, and will achieve the best ratio of invested funds to achieved results.

Project 1: Getting HCM patients personalized psychological support

Project description: HCM has a heavy psychologicl toll on HCM patients and their families. HCM symptoms and the fear or inability of performing physical activities and common tasks may lead to disorders of mood, anxiety, panic attacks, substance use, and numerous issues associated with family, work, retirement, attitude to life, guilt, etc. Often these issues are neglected because of fear, shame, cultural aspects, or other factors. Unfortunately very often psychologists are also not trained or experienced enough to handle the specific and complex needs of HCM paients. It is our goal to provide support, where possible.

Project purpose: Create a pool of psychologists who are qualified to handle the needs of patients with a chronic cardiac disease like HCM and educate them about the peculiarities of HCM. Give HCM patients the possibility to apply for individual consultations with psychologists from that pool.

Project scope:

  • Get a minimum of three and a maximum of ten psychologists in the pool to cover at least 5 European languages.

  • Create an online tool for vetting of eligible HCM patients, as well as for the finding and reservation of psychologists.

  • Provide at least 200 hours of free consultations for patients (costs of psychologists to be covered by HCM Patient foundation as well as by donations by psychologists themselves).

Project budget: a minimum of 12 000 EUR is necessary to assure at least 150 patient hours with qualified psychologists.

Project timeline:

Stage 1: Fundraising – 8 to 12 weeks
Stage 2: Creation of online reservation tool – 4 to 8 weeks
Stage 3: Recruitement of psychologists – 4 to 8 weeks
Stage 4: Reservation of consultations until the paid-for hours are exhausted. – as demanded
Stage 5: Continue funding efforts for project to ensure continuation of sessions – ongoing.

Project 2: Collecting information about HCM patients and other stakeholders in the European Union

Project description: The project has two goals:

Primary: to collect information about HCM patients in the European Union (EU), the challenges they face, their disease and treatment path, interactions with the health system, level of satisfaction with medical care and current medications, impact of HCM on their personal lives, wants, desires and suggestions for improvement, etc. This will be achieved via the deployment of an online questionnaire which will be available in English and five EU languages – German, French, Spanish, Italian and Dutch. The minimum goal will be to achieve at least 200 replies, the maximum 500 to 700 replies. For increasing the reach of the questionnaire we will use social media, patient groups and organizations, as well as search advertising. In the end results will be analyzed in depth and published on the Foundation website, as well as sent individually to all survey participants who have opted in for that.

Secondary: to collect information about the level of HCM awareness among General Practitioners (GPs) and generic cardiologists. For this purpose we will make in-depth interviews with GPs and cardiologists from five countries: Germany, Italy, the Netherlands, Bulgaria, and France. The interviews will aim to discover how and if HCM symptoms are recognized, whether existing HCM management guidelines are followed, what kind of treatments are prescribed (including surgeries and device implantation), what is the patient path from a systemic point of view, how many HCM patients on average are treated, etc. We aim to achieve at least 2 interviews with GPs and 2 interviews with cardiologists per country, circumstances permitting. These interviews will serve as the basis for the development of a questionnaire for a quantitative study in the future (subject to a different project). They will also give very useful insights for the future development of information materials (e.g. brochure, video, etc.) targeted at GPs. A summary of the report will be published on the Foundation’s website. A detailed report will be provided to the sponsors of the project.

Project purpose: Collected data will allow an objective view to an area which, to the best of our knowledge, had not been explored yet – the impact of HCM on patients based in EU, as well as the real situation with diagnostics and care for them. These results will also allow the creation of targeted communication materials, and the contact data gathered will serve as the basis for the creation of an EU HCM patient community, Collected results can also successfully be used in lobbying activities in front of EU institutions.

Project scope:

  • A minimum of 200 patient and patient caretaker responses in the online survey.

  • A minimum of 10 respondents in the GP and cardiologists survey.

  • The publication of in-depth analysis of the patient survey.

Project budget and utilization : The total estimated budget is EUR 20000. It will be used for the following:

  • Software licenses – we will be using Qualtrics, considered to be among the very best market research software available.

  • Database creation, security and maintenance – as we will need to adhere to the GDPR rules in the EU, additional data security will be needed. The database of participants will need to be hosted on a secure server and access to it additionally protected.

  • Translation of survey and replies to qualitative questions in it – the survey will be translated into German, French, Spanish, Italian and Dutch. There will be a need for a back translation into English of replies to qualitative question from respondents in these languages.

  • Legal – we will need legal advice regarding data security, incentives, etc.

  • Questionnaire development and pre-testing – we will use the support of outside market research specialists in questionnaire development and pre-testing.

  • Incentives for participants – we will provide different material incentives for participants: a prize draw and books for participants in the online survey, and an Amazon voucher for interview participants.

  • Online advertising – we will develop a banner to promote the survey to people on social media and those who search for HCM-related terms.

  • Data analysis and summary into final reports – we will use the support of outside market research specialists and statisticians in data analysis and summarization.

  • Translation of reports for online publication – reports will be translated into all languages of the online survey.

  • Travel costs (for face-to-face interviews) – as a face-to-face interview is the best way to collect sensitive information, we will have to meet in person with as many as possible of the interview participants.

Project timeline:

Stage 1: Setup – 4 to 8 weeks
Stage 2: Fieldwork Qualitative studies – 4 to 8 weeks
Stage 3: Questionnaire development, translations and pre-testing – 5 to 7 weeks
Stage 4: Online questionnaire deployment – 4 weeks
Stage 5: Data analysis and publication – 4 weeks

Project 3: Develop and deploy a mobile application

Project description: We aim to develop and deploy a mobile phone application targeted at the specific needs of HCM patients for iOS and Android.

Project purpose: Create a tool which will make the lives of thousands of HCM patients easier and will allow a better interface to them from key stakeholders like the health system, treating physicians, pharmaceutical companies, etc.
The presence of such an pllication will also allow for the collection of relevant data for the needs and lifestyle of HCM patients.

Project scope: Create iOS and Android versions of a mobile application covering the following functionalities:

  • HCM patient profile creation.

  • Inform about HCM news and trials.

  • Symptom tracker – give users and their physicians the possibility to track their symptoms and see how they develop in time.

  • Take medicine reminder.

  • Diet advice.

  • Activity advisor – give advice on advised physical activities based on patient profile.

  • HCM medications – list common medications used in HCM and its complications and list side effects and drug interactions.

The application needs to be flexible enough to allow extension with further functionalities in the future and to provide complete data security with the most modern methods.

Project budget and utilization: The total estimated budget is EUR 90000. It will cover the development of the application and its deployment on both operation systems.
Yearly maintenance of the application is not included in this ammount and is estimated at 10 to 15 % of project costs.


Project timeline:

Stage 1: Write-up of detailed specifications (ideation and research) – 10 weeks
Stage 2: UX/UI design – 4 to 8 weeks
Stage 3: Application development – 12 to 18 weeks
Stage 4: Testing – 4 weeks
Stage 5: Deployment – 2 to 4 weeks
Stage 6: Post-launch optimization – 4 to 8 weeks

Project 4: Write and publish a book with the stories of HCM patients from different countries in the European Union

Project description: We will interview HCM patients from all EU countries and will tell their stories in a short story format. Patients will choose whether they want their names disclosed or their data anonymized.

Project purpose: Create a profile of HCM patients in the EU on a very personal level. Describe the difficulties they face and ther successes in fighting the disease. This will allow HCM patients and key stakeholders to realize in more details the challenges that living with HCM presents and how other people cope with them, as well as identidy best practices across countries.

Project scope: Write and publish a book in English of at least 50 000 words. The book will be published in 1000 copies and will be distributed free of charge to members of the HCM Patient Foundation and other HCM patients. It will also be availble as an eBook on hcmpatient.eu. Additionally, country patient organizations will be given the possibility to translate the book in local languages and publish it.

Project budget and utilization: The total estimated budget is EUR 18000. It will cover the following:

  • Concept development.

  • Interviews (including travel costs where applicable).

  • Writing by a professional author.

  • Editing and proofing.

  • Cover design.

  • Printing of 1000 copies.

Project timeline:

Stage 1: Concept development – 4 weeks
Stage 2: Interviews (including translation) – 12 to 16 weeks
Stage 3: Writing – 12 to 18 weeks
Stage 4: Cover design – 4 weeks
Stage 5: Printing – 4 to 6 weeks

Project 5: Create an animation video on HCM

Project description: We will create a high-quality animation video with the purpose of explaining HCM to patients and general practitioners (GPs).

Project purpose: Create a visual tool for explaining better HCM, its mechanism, most common expression and consequences.

Project scope: Create a high quality animation video with the length of 200 to 360 seconds (depending on accumulated funds). Translate the video with subtitles in at least 10 languages of the European Union.

Project budget and utilization: The total estimated budget is EUR 25000 (for a 200-second video). It will cover the following:

  • Concept development.

  • Script.

  • Video production (including music and copyrights).

  • Translation.

  • Online deployment.

Project timeline:

Stage 1: Concept development – 4 weeks

Stage 2: Script writing – 2 weeks

Stage 3: Video production – 8 to 12 weeks

Stage 4: Translations – 4 weeks

Stage 5: Online deployment – 2 weeks