Rare Diseases International
![enb.iisd.org New York hosted a Side-Event to the UN High-Level Political Forum on Sustainable Development (HLPF) to discuss how addressing the challenges faced by this group of people.](https://nonprofit.xarxanet.org/sites/nonprofit.xarxanet.org/files/styles/xn19_responsive_image/public/enb_hlpf2019_16july19_kiaraworth-7.jpeg?itok=pZFP0ZUa&c=422cc9d548b5dbd3904ebf04d5017366)
New York hosted a Side-Event to the UN High-Level Political Forum on Sustainable Development (HLPF) to discuss how addressing the challenges faced by this group of people.
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![Àlex Roca Àlex, Glòria and Lluc, in the garden of their house in Manlleu.](https://nonprofit.xarxanet.org/sites/nonprofit.xarxanet.org/files/styles/xn19_responsive_image/public/alex_roca.jpeg?itok=3f8Dk3lW&c=ecd823e30505026ee4849507ac057520)
We spoke with Àlex Roca, Lluc’s father and promoter of Petits Superherois (Small Superheroes), an association of parents of children with centronuclear myopathies.
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![Rare Diseases International Flaminia Macchia, the executive director of Rare Diseases International.](https://nonprofit.xarxanet.org/sites/nonprofit.xarxanet.org/files/styles/xn19_responsive_image/public/img_2209.jpg?itok=AVag5KtV&c=c1ddc93b1fd1ae723284e36b65a87a51)
On the occasion of Rare Disease Day, we interview the executive director of Rare Diseases International, a network of 76 member organisations representing rare disease patient groups in over 100 countries worldwide.
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