CENÁRIO DAS DOENÇAS RARAS NO BRASIL - 9ª EDIÇÃO CASA HUNTER

ANS

Alexandra Heumber Perry is the Chief Executive 
Officer of Rare Diseases International, the global 
alliance of Persons Living with a Rare Disease. She has 
dedicated her entire career to contribute improving 
healthcare policies to benefit people living with 
diseases, with a particular focus in neglected and 
vulnerable people. She has over 20 years’ experience 
in global health with demonstrated capabilities in 
patient advocacy and multi-stakeholder partnership. 
As CEO of RDI, Alexandra sets the strategic direction, 
drives the organization's goals of raising awareness of 
rare diseases, improving access to diagnostics, 
treatments and care, advocating for the rights of 
patients around the world and representing its members and enhancing their 
capacities to ultimately improve lives of Persons Living with a Rare Disease.
ABOUT RARE DISEASES INTERNATIONAL
Rare Diseases International (RDI) is the global alliance of People Living with a Rare 
Disease (PLWRD) of all nationalities across all rare diseases. RDI’s mission is to be a 
strong common voice on behalf of rare disease patients around the world, to advocate 
for rare diseases as an international public health priority and to represent its 
members and enhance their capacities. 
RDI’s main goal is to address PLWRD' inequities and to shape international policy on 
rare diseases, strengthening health systems to address rare diseases, and advancing 
Universal Health Coverage. RDI was successful in having rare diseases identified in 
the 2019 UN Declaration on Universal Health Coverage and again in the 2023 
renewal. In 2021, RDI successfully advocated for the adoption of a United Nations 
General Assembly (UNGA) Resolution on Rare Diseases. 
RDI has since 2019 a Memorandum of Understanding with the World Health 
Organization (WHO) and is in the process of becoming on Non-State Actor in official 
relation with the WHO.
RDI has 96 members including 49 National Alliances representing all rare diseases in 
one country, 4 Regional Alliances representing multiple national alliances across a 
geographical region, 35 disease-specific International Federations representing the 
same rare disease or disease area internationally and 8 multi-stakeholder platforms 
working for address the needs of Rare Diseases Community.

Secretária Executiva dos Direitos da Pessoa com Deficiência de SP.

Andréia Bessa, é economista e advogada, pós-graduada em direto Tributário pelo IBET (Instituto Brasileiro de Estudos Tributários), nascida no município de Campinas/SP, em 17/02/77 (42 anos) é militante e Defensora dos Direitos Humanos .

Desde o início da militância política e ao longo da vida pública, tem atuação destacada na defesa dos direitos humanos, principalmente, nas áreas de políticas públicas, como saúde e educação
Atualmente, atua intensamente na defesa dos direitos ao acesso à Saúde, juntamente com diversas associações de pacientes. Hoje o Estado e os cidadãos portadores de graves e raras enfermidades, passam por uma grande problemático quanto ao acesoo aos medicamentos. De um lado o paciente, que na maioria das vezes totalmente hipossuficiente. Por outro lado, O Estado alegando a impossibilidade de recursos para prestar a assistência integral ao paciente.