‘There was no sense of community. Everyone was struggling alone,’ said Marijk Beekman of HAE Netherlands, who was no doubt speaking for many when she told the GLW about the situation facing people with HAE.

The second morning of the GLW continued the advocacy Masterclasses, hearing from RPAs and patient advocacy leaders. These Masterclasses tapped into the wealth of experience, ideas, and passion of the global HAE community focusing on the key challenges in setting up and running a successful MO. The first Masterclass, understandably, started at the beginning:

Registering and managing a patient organization

Director RPA Program, Michal Rutkowski welcomed to the stage Renata Martins Marchese from Abranghe Brazil (HAE Brazil) and Marijk Beekman of HAE Netherlands.

A nervous Renata was given a supportive extra round of applause as she responded to a question about why she established an organization in Brazil. She started by telling the audience that there was an understandable personal desire to get treatment and have a better life, but swiftly it became about all the other people she saw that had the same disease.

The critical first steps to an organization are writing the rules, including founding principles like the organization’s mission and goals, and registering with the appropriate authorities. Without this, Renata told the audience: ‘it is impossible to receive donations or have bank accounts.’ For much of this, a lawyer advised them to ensure the relevant Brazilian laws were followed.

The Brazilian HAE organization now has around 1,600 members, but to begin with, Renata stressed that to get the support you need, just ask. Renata asked everyone and usually said: ‘Please help me. Do you know how to do this? Please help.’

Moving onto finances and funding, Renata said that the pharmaceutical industry initially approached them as they worked to bring products to the Brazilian market many years ago. Since then, their finances have grown, but it is, Renata said, essential to ensure sustainability. HAE Brazil has an annual work plan in which they allocate budget to projects but not at the expense of fixed costs such as IT or meeting space.

‘A lot of patients didn’t even know what HAE was. We identified an enormous lack of information,’ said Marijk, when asked about the immediate needs of the HAE community in the Netherlands. To address this, Marijk partnered with healthcare professionals on the text of a new website. This was followed by an information day to bring patients together and show that it is possible to live your life without having attacks all the time. Subsequent programs have told patient stories, and specific activities for young people are being worked on.

A specific issue for the Dutch organization was that it was for people with all forms of angioedema. Ultimately, Marijk said, the intention is to create an organization specifically for HAE, but this is a long-term goal.

One tip from Marijk was to keep an eye on the HAEi website. ‘We always go there first to see if there’s something we can use, some resource or program that we can use.’ Another was the importance of proactivity. In common with Renata’s experience, Marijk said no one will come to you. Just keep reaching out, she told the audience. 10 no’s in response might become a yes on the 11th time.

‘If I struggle, I reach out to my Regional Patient Advocate, or I reach out to other people to ask if they know what to do, and perhaps we can do it together. We’re HAE patients, so we’re adaptable people.’

Again, in line with Renata’s annual work plans, Marijk outlined how every year, the board of the HAE Netherlands sit down to review what they’ve achieved and gather data on the most critical priorities next year.

One of those priorities was in-person meetings. According to Marijk, it was a big request from her community, so they had just completed their first such meeting. Due to its success a future meeting is planned, to which they will also invite patients from Belgium, where there are language similarities, helping to share knowledge.

Michal’s final question was about bringing people into the organization. Marijk said that sharing information on social media, newsletters, and emails can help, but ultimately she said that it’s important that people see that they’ve missed something by not being involved.

Her aim, she said, is to have people think: ‘Wow, they are a bunch of cool people. I want to be part of that!’

Increasing patient group numbers

‘The mantra is: Every contact you make, every single one of them is a potential member.’

Tony Castaldo, in his role at HAEA, was in conversation with Fernanda de Oliveira, the RPA for South America and Mexico. Their topic of discussion was how to attract new members to a patient advocacy organization.

Now celebrating its 25th anniversary, the US HAEA has grown to over 10,000 members. When HAEA first started as a fully volunteer organization, everybody was aligned with the concept that there is incredible strength in numbers. Part of this came from the realization that pharmaceutical companies wanted to know how many people have a disease before investing and that you can achieve more when more people come together.

Tony explained that US HAEA has the philosophy of the ‘big hand.’ He explained that: ‘This big, warm, happy hand has Velcro on it, you know the sticky stuff. Anytime anyone comes into our orbit with a swelling disorder, we want them to get stuck to that warm hand.’

Practically he offered the following tips:

• Have a very clear statement of purpose that everyone can see.
• Reflect the needs of people in your country. People want to be part of something that meets their specific requirements. That will vary, depending on where you are in your advocacy journey
• Make finding and activating new members a primary organizational goal.
• Consider where folks with swelling disorder will be, such as hospitals or specialized centers
• Every communication you make with anybody, make a pitch to sign them up
• Be persistent and kind. Always keep that positive attitude
• Always be on the lookout for opportunities to use your creativity
• Show them that you’re a helping organization.

Regarding the best tools to reach people, Tony mentioned the free web hosting service and other tools provided by HAEi. ‘Is there anybody that doesn’t like free’ he asked, light-heartedly.

Beyond using the web, social channels, and, wherever possible in-person meetings, Tony highlighted the importance of good relationships with HAE specialist healthcare professionals. These are the people who are constantly in touch with people with HAE or unknown chronic swelling disorders.

‘Healthcare professionals are finding HAE patients. Make sure that every one of those are referred to your organization.’

Cultural sensitivity and stigma reduction strategies

‘People don’t want to feel that they’re different,’ said Janice Strydom of HAE South Africa, encapsulating the issue of stigma around a rare genetic disease and the challenges it can cause to advocacy work.

Janice Strydom and Makiko Matsuyama of HAE Japan spoke about stigma reduction and cultural sensitivity in the third GLW masterclass. Asking the questions, Fiona Wardman.

Expanding on the problem of stigma, Janice mentioned that even when one patient is diagnosed, it can be hard to encourage the rest of the family to be tested, despite the dangers of undiagnosed disease. Some, she said, don’t feel they have regular enough attacks, but for some, it’s just not wanting to acknowledge that there’s anything wrong. They don’t want to stand out in society.

Janice’s own experience in employment highlighted one stigma. A routine medical before starting a new job resulted in Janice sharing her HAE diagnosis. Providing the diagnosis meant she lost her job and led to persistent problems within the sector where she works. According to Janice, people hear about these kinds of experiences, and they stand in the way of people coming forward for testing.

Makiko felt that stigma was a big topic in Japan. Her perspective was that for Asian people, there may be culturally less openness around an illness like HAE, and stigma was something she heard often from patients.

Fiona asked both advocacy leaders what course of action they take when someone doesn’t want to be diagnosed. In South Africa, Janice said, it’s essential to show the benefits outweigh the risks. She admitted that, due to limited treatment options in the country, this can be difficult. However, there is power in putting people in touch with other patients so they can hear their experiences first-hand.

Makiko agreed that telling your own story is powerful. She lost her husband due to HAE, but despite this, her message was a positive one. ‘Don’t be afraid. You can enjoy life,’ is what Makiko tells people.

Fiona asked what other steps your organizations have taken to address barriers to seeking support and joining the HAE community.

Janice stressed that there is a very diverse cultural community in South Africa, with 11 official languages, so there are many differences. However, lack of knowledge, fear, and the importance of the family unit were common themes for everyone. As a result, much of HAE South Africa’s information sharing focuses on reaching beyond the patient to their wider family.

Makiko expanded on having an upbeat message. She said it was essential to show a positive attitude. When TV journalists ask if she is sad about the loss of her husband, she turns it around to something positive about what can be achieved.

Working with a broader rare disease group in South Africa, Janice saw an initiative that aimed to reach traditional healers, who are often the first support for members of the community. HAE South Africa is now working with these traditional healers to ensure they understand HAE and can refer any patients to them.

HAE Japan has engaged a genetic counselor to attend patient meetings and to talk to HAE patients, as this can help people understand the disease better.

Summing up, the experiences shared in the masterclass made clear that:

• The openness of shared stories helps understanding, especially if it shows there are no wrong questions
• Regular communication helps. If you have experience with the media, use that. In some countries, such as South Africa, a simple WhatsApp group can be very successful.
• Build collaborations. In Japan, there is a consortium of doctors, academics, patient advocates, pharmaceutical companies and employers to raise awareness

Making the most of media and events

Stepping next onto the big, big stage at the GLW were Michelle Cooper of HAE Canada and Danail Dimov of HAE Bulgaria. Natasa Anjeleska, RPA kept the conversation flowing.

After agreeing that Bulgaria should go first, purely alphabetically, Danail was asked about his organization. He remarked that it started officially in 2018 and has ‘had a lot of fights’ in the years since. Their success, he said, has been such that there are many treatment options available, including prophylaxis, ‘which is something for a small country like Bulgaria, which is not very rich.’

For Danail, his passion project was a recent documentary about HAE, shown on Bulgarian national TV. Inspired by the film Special Blood, they focused on Bulgarian stories and patients and agreed with presenters in the earlier session that sharing stories can help address stigma.

In Canada, Michelle said they were proud of a recent awareness campaign that lit famous Canadian landmarks in HAE’s signature color. ‘But what color is HAE?’ Michelle asked. The answer came during the HAEi Regional Conference Americas, held in Panama: Purple. The campaign’s culmination was that the famous CN Tower in Ontario went purple during hae day :-).

Michelle mentioned using the skills of patient members. One of their patients was a specialist in social media, and their plan took HAE Canada’s activities to another level.

After the HAE documentary aired in Bulgaria, Danail was contacted by healthcare professionals, including an Associate Professor with two decades of experience who had never heard of HAE. As soon as they knew more, they identified two potential patients.

Despite the challenges of getting TV media interested in the documentary, Danail knew that TV was the most used media in Bulgaria. Reacting to what she’d heard, Michelle felt inspired enough to try a documentary themselves, especially if it meant creating more long-term opportunities for awareness beyond a single moment or day.