Welcome to day two

After Fiona and Jørn briefly recapped day one and welcomed everyone back for the second day of the conference, the two HAEi Executive Team members introduced a full day of sessions and panel discussions on the theme of driving change worldwide.

Make a difference – driving change worldwide – registering organizations

The first session began at the start of an organization’s advocacy journey, covering the process of officially registering the organization. Fernanda de Oliveira Martins chaired the session, which heard from Member Organization (MO) leaders from the Dominican Republic, Ireland, Türkiye, and Paraguay.

Fernanda posed the first question to Ersan Sevinç from HAE Turkiye: What are the benefits of formally registering your MO? He responded that it represented the first step in establishing the organization’s credibility among the many individuals and groups it needed to reach. He referenced meetings with the Ministry of Health, which he felt just wouldn’t have been possible without them knowing that the HAE advocacy organization they are speaking to is a legitimate counterpart.

Turning to Yujin Yamamoto from HAE Ireland, Fernanda asked about their ongoing journey towards becoming registered and what prompted them to start the process. Yujin responded that registration was the means by which the organization could conduct more awareness-raising activities, as it would unlock sources of funding that would be unavailable to an informal organization. Ersan reinforced this benefit: “If we had not registered the organization, we would not be able to find funds or get funded by the different grants we have in the country.”

From HAE Dominican Republic, Andry Batista said the registration process has been ongoing for more than a year, with much time spent completing documentation and waiting for Government agencies to review it. Despite this, he encouraged people not to be discouraged, as the eventual benefits will mean people with HAE, like his own sister, can live better lives.

Yujin added to that point when asked about the process. He said that neither he nor HAE Ireland National Contact, Bettina, is a lawyer or tax accountant, so they sought out that expertise from firms that specialize in supporting not-for-profit organizations. There was a cost involved, supported by HAEi. Sometimes large companies do this work for free, and that’s worth exploring.

Concluding the session, Nathalia Portillo of HAE Paraguay told the audience that it is important to work step-by-step and progress a little at a time. She said the Paraguayan organization is already seeing the benefits.

‘I encourage any organization to engage with HAEi; they offer vital support and motivation with the registration process.’

– Nathalia Portillo, HAE Paraguay