We recently had the privilege of interviewing Dr. Frank Grossmann, Founder of the NGO, OrphanHealthcare and Social entrepreneur of Orphanbiotec AG. Orphan Healthcare is a Swiss-based charitable organization supporting rare diseases worldwide, and is a sustainable business model for innovations in this field. He is also member of the management and board member in several companies. In this insightful session, Dr. Frank shares about his professional path and highlights of his NGO, OrphanHealthcare.
The Beginning
We started the interview by asking, “Can you walk us through your professional journey and how it led to where you are today?”
Dr. Frank Grossman shared, “My journey into the field of rare diseases began with a personal experience, at the age of 12 I was diagnosed with a ultra rare cancer, which led me years later to my commitment to do something meaningful in life and make a difference. And that’s how I became the founder of an international NGO, OrphanHealthcare and Orphanbiotec AG. My academic background is in medical and pharmaceutical research and development, which initially focussed on general health issues at ETH Zurich.
However, I was deeply touched by the problems faced by people with rare diseases who still receive little attention and support today. This inspired me to invest in both organizations that provide targeted day-to-day support, advocacy, guidance and innovative solutions for those affected by rare diseases.
In Europe alone, 22 million children and their families live in such a condition. Over the years, I have also had the privilege of receiving several awards for my work as a social entrepreneur, including the SEIF Award in 2012 and the W.A. De Vigier Award in 2014. These recognitions have strengthened my passion and commitment to my work.” And meeting H.E., the former President and the former First Lady of Malta in 2023, to receive their personal support for our healthcare care program in Malta, was a wonderful and humbling moment. (picture 1)
Adaptability Amidst Challenges
Challenges are an inevitable part of every professional path. To learn how Dr. Frank Grossmann overcame the same, we asked, “Reflecting on your career, what have been some of the most significant challenges you’ve faced, and how did you overcome them?”
Dr. Frank Grossman replied, “One of the biggest challenges was to raise awareness and secure funding for rare diseases, as even today these diseases do not receive the attention they deserve. To solve this problem, we have focused heavily on lobbying, public awareness, education and fundraising. We have developed comprehensive awareness campaigns that are on the road in 8 countries and have worked with international organizations such as EURORDIS and over 12 clinics to target knowledge about these diseases.
Another challenge was and is securing sustainable research funding. This is because research and support for this patient group is still difficult to fund. We have addressed this through a diversified funding strategy that includes grants, foundations, CSR partnerships and a network of private donors. In addition, we have created revenue streams through the sale of our educational materials, which have already reached more than 60,000 children across Europe.”
Balancing The Daily Operations
We were also interested to learn how Dr. Frank Grossmann maintains a balance between the operational requirements and visions. So, we asked, “How do you balance long-term vision with short-term operational needs?”
He responded, “The balance between a long-term vision and short-term operational needs requires strategic planning and flexibility. At my NGO OrphanHealthcare, for example, we have a clear long-term vision, which is to improve the lives of people living with rare diseases by providing comprehensive support in the form of education, counseling, guidance and empowerment so that they can return to resilience, and later help others age. Because children need stories to understand their condition and the special support they require, I turned all the comic characters from my book into handmade puppets through a Circular Economy project with indigenous people of Bolivia.(pic.2)
At the same time, we focus on short-term goals that align with this vision, such as expanding our education programs and securing immediate funding for individual projects. Regularly reviewing and adapting our strategies ensures that we maintain our long-term goals while effectively managing our day-to-day business.”
Current Offerings
We further asked, “Tell us more about your services and if you are planning to add something new in the future.”
Dr. Frank Grossman said, “OrphanHealthcare offers a wide range of services, including comprehensive counseling, individual support, empowerment, education and direct help for families and children with rare diseases. Our health promotion program, Elfen Helfen, and our educational comic are among our most successful initiatives.
We also offer trauma therapy articles, support camps and workshops for all partners included. For the future, we plan to expand our services by working in a new campus including the introduction of new therapeutic products and the expansion of our educational programs. We are also working to fund our professional services such as coaching and trauma therapy with solid partners to ensure sustainable work.”
Unlocking Potential Opportunities
Eager to understand how Dr. Frank assesses the market trends, we inquired, “What methods do you use to analyze market trends, and how have these influenced your business decisions?”
“We analyze market trends through a combination of information analysis, stakeholder feedback and collaboration with industry and healthcare experts. We keep up to date with the latest developments in healthcare and rare diseases by attending conferences, participating in research studies and engaging with partner and patient organizations. This information helps us to recognize new needs and opportunities and adapt our services and products accordingly.
For example, the growing demand for digital health solutions has prompted us to look for ways in which we can integrate this technology even better into our support programs.” He shared.
Impact Of Digital Transformation
We asked, “How has digital transformation affected your business model?”
Dr. Frank Grossman shared, “Digital transformation has also impacted our business model by improving our ability to reach and support a wider audience. We have implemented digital offerings for counseling and education that allow us to connect with families and healthcare professionals around the world.
Our new online shop and digital marketing efforts are designed to increase the visibility and accessibility of our therapeutic products. In addition, digital tools have streamlined our work, allowing us to fulfill our mission more efficiently and effectively.”
Envisioning The Future
Fast-paced digital transformation are reshaping the business landscape. We asked, “What emerging technologies do you believe will have the most significant impact on your industry in the next five years?”
Dr. Frank Grossman shared, “Emerging technologies such as artificial intelligence (AI), telemedicine and genomics are likely to have a major impact on our industry. AI can help to analyze large data sets to identify patterns and develop personalized treatment plans for rare diseases. Telemedicine extends our reach and allows us to provide remote support and counseling to families who cannot access our services in person.
Advances in genomic research are critical to developing targeted therapies and understanding the genetic basis of rare diseases, ultimately leading to more effective treatments and better outcomes for patients. And the patient should be placed more at the center of therapies as a self-determining partner, as those affected are often the secret specialists of their disease and know best what could help them.”
Employee Empowerment
To learn more about the strategies adopted by Dr. Frank Grossman to ensure better employee experiences, we asked, “What strategies do you implement to maintain high levels of employee engagement and satisfaction?”
Dr. Frank Grossman shared, “Personally, I place great importance on creating a supportive and inclusive work environment where all employees can contribute and feel valued. Regular team meetings, having a say in projects, professional development opportunities and recognising individual contributions are important ways we do this. We also promote a healthy work-life balance and provide resources for mental and physical wellbeing.
For example, our office also has a chill area with a hammock for anyone who needs to recharge their batteries. We also have an office dog who sometimes looks after children who are doing their school work in the afternoon. By fostering a culture of collaboration and open communication, we ensure that our team stays engaged and committed to our mission.”
Securing A Lasting Legacy
We ended the interview by asking, “How do you want your business to be remembered, and what steps are you taking to secure that legacy?”
Frank concluded, “I want OrphanHealthcare to remain active and strong as a pioneering organization in the future and even without me in the future, having significantly improvment on the lives of people living with rare diseases through innovative solutions and unwavering support. And we want to reach out to many other countries to support affected children and families.
To secure this legacy, we are building strong partnerships with leading organizations, governments, patient organizations and investing in sustainable solutions for affected families, and continuously improving our services based on feedback.
Our commitment to excellence and dedication in making a difference will ensure that OrphanHealthcare remains a beacon of hope and support for families and children living with rare diseases for many years to come. We also hope to find many more sponsors, as our continued work is largely funded by donations, which can be made here:here.”
Find Dr. Frank Grossman on LinkedIn.
Follow Orphan Healthcare on LinkedIn, Instagram, and visit their website www.orphanhealthcare.org.
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