What I learned in 10 years of HAE Advocacy

I had the incredible opportunity to represent HAE Turkey at the 2024 HAEi Global Leadership Workshop (GLW), held from October 3-6, 2024, in Copenhagen, Denmark. The GLW brought together more than 750 participants from almost 100 countries.

It was truly heartwarming to reconnect with friends worldwide, sharing our stories and experiences and nurturing these life-long friendships. That might sound strange, but having HAE and being part of this amazing, supportive global community makes me feel blessed.

Our great moderator, Yong Hao, and dear friend Carla from HAE Peru

I felt so proud and honored to be on stage to share our experiences. I was also honored to be a speaker in a masterclass, “Building Stronger Patient Communities: Working with Government, Case Studies, Strategies for Growth, Overcoming Barriers, and Effective Advocacy.”

During my session, I shared some of the experiences and lessons we’ve gathered in our journey to raise awareness, improve treatment access, and foster collaboration for a rare disease called hereditary angioedema (HAE) in Turkey. The discussion of our session centered around four key questions:

What inspired you and your organization to advocate for HAE nationally, and how did you know your efforts made a difference?

We all started alone at the beginning; that was how I felt when I got my diagnosis. But I was lucky to find my community, my people. We united for the same goal: “improving the lives of people with HAE,” just as we all do in our respective countries.

We were driven by a shared feeling of isolation and the need to change the misdiagnosis landscape.

• National Awareness: Inspired by the sense of isolation, we raised national awareness about HAE, helping others avoid years of misdiagnosis and the burden of untreated HAE.
• Improved Access to Treatments: Registered three new original medications—Ruconest, Berinert, and Takhzyro—along with four generic alternatives of icatibant, all domestically produced, ensuring a stable supply and more treatment options for the patients in Turkey. C1-Inhibitors are also available and reimbursed for acute attack and prophylaxis in some cases.
• Participation in Clinical Trials: Over 20 participants, including some of the board members, joined clinical trials for modern medications, which led to improved quality of life for those with severe HAE attacks.
• Strong Collaboration with Physicians and Authorities: Established strong partnerships with physicians and key authorities, including the Ministry of Health, the National Social Security Institution, The Turkish National Society of Allergy and Clinical Immunology, and the Turkish National Rare Diseases Association, amplifying the patient voice in Turkey’s HAE projects.
• Guidance for Diagnosis and Treatment: Connected many individuals with specialists for diagnosis and treatment, ensuring timely and appropriate care for HAE patients. Delay in diagnosis is an issue and must always be observed with the physician network to improve it.

How did you ensure your message about HAE reached people across the country?

Turkey is a vast country, and within our context, collaborating with expert physicians nationwide has helped many patients receive accurate diagnoses and appropriate treatments. We are grateful and fortunate to maintain such excellent communication and cooperation with our medical professionals.

• Diagnosis and Family Screening Campaign: Launched the “Diagnosis and Family Screening Campaign,” which helped over 300 individuals get tested, leading to more than 70 new HAE diagnoses.
• Media Outreach: Utilized social media, internet platforms, and traditional media like magazines and newspapers to spread awareness across the country.
• Public Awareness via Media: Collaborated with Alican Sabunsoy, a well-known TV figure, who shared his experience as an HAE patient on the national TV show “MasterChef,” resulting in widespread awareness and more than ten new diagnoses. An Instagram post about this reached over 57,000 people in Turkey. The YouTube video has been watched more than 300,000 times https://youtu.be/8hKqIy5-nzc?si=TnjOWquDilZl7CW7&t=309
• Collaboration with National Associations: Partnered with the Turkish National Association of Allergy & Clinical Immunology (Türkiye Ulusal Alerji ve Klinik İmmünoloji Derneği) and the National Rare Diseases Association to train over 150 healthcare professionals, improving early diagnosis and proper treatment.
• Policy Recommendations: Developed comprehensive policy recommendations on diagnosis delays, treatment access, work and education challenges, and social rights, and presented these to the Ministry of Health and other relevant authorities with the help of Sağlıklı Hayatı Teşvik ve Sağlık Politikaları Derneği.

What challenges did you face, and how did you handle them?

• Embracing the Baby Steps: We learned that significant change doesn’t happen overnight. It was important to celebrate small victories along the way—whether it was securing a single new diagnosis, establishing contact with a physician, or organizing our first patient meeting. These small wins kept us motivated and built momentum for larger accomplishments. By focusing on achievable milestones, we expanded our reach and impact gradually.
• Breaking Down Barriers: We worked to change people’s perceptions of the association and HAE as a whole.
• Most Attended Event in Association History: Organized an online event during the COVID-19 pandemic, attracting over 200 live participants. The number of attendees was even higher since families often joined together.
• Supportive Online Environment: Created a virtual space for open dialogue where patients and caregivers could share stories, ask questions, and receive support during uncertain times. Extended the planned 1.5-hour session to nearly 4 hours based on participant engagement, ensuring everyone had a chance to ask questions and share experiences.

What’s one key lesson you’ve learned, and how would you apply it to future efforts or advise others aiming for national impact?

The broader your reach, the greater the efforts you’ll need to make.

• Sustainable Systems: Establish sustainable and manageable systems for your initiatives. The broader your reach, the greater the efforts you’ll need to make. This has been a key learning from my 10 years of HAE advocacy experience and is crucial for all patient organizations in their advocacy journey.
• Defined Processes and Action Planning: Establish a clear mission and set specific, realistic goals. Define the who, what, when, where, and how for processes and actions (e.g., posting at least one monthly informative post on social media).

• Data-Driven Advocacy: Collected data on HAE prevalence, diagnosis delays, and treatment accessibility, which has been invaluable in policy discussions with the Ministry of Health. Strong data is the easiest way to support your arguments.
• Team Training and Capacity Building: Invested in training programs to enhance skills in advocacy, legal matters, and project management for the team, ensuring continued growth.
• Collaborations with Other NGOs and Universities: Established partnerships with universities to engage young advocates and researchers, expanding our organization’s reach and impact.

I want to thank HAEi and all friends around the world for our united efforts to provide a better life for people with HAE.

I’d love to hear your thoughts or connect with others working in patient advocacy. I’m learning every day, and I’m ready to learn from your experiences, too!