| Affiliation with other organizations: |
International Alliance for Patient Organizations IAPO, (In Consultative ECOSOC since 2014),Union for International Cancer Control UICC, Global Lung Cancer Coalition, International Alliance for Dermatology Patients, International Kidney Cancer Coalition, Iberoamerican Aliance for Rare Diseases ALIBER, Global Coalition for Melanoma, Latin American Patients Academy, Biored Peru, CMLAdvocates, European Cancer Patients Forum ECPC, Union Latinoamericana contra el cancer de Pulmon ULACPUL, Union Latinoamericana contra el Cancer de la mujer, Rare Desease Working groun APEC |
| Purpose of the organization: |
ESPERANTRA is a non-profit organization, founded in 2005 with the purpose of contributing to the reduction of mortality from high risk non-communicable diseases (cancer; high-cost, rare chronic diseases). ESPERANTRA works for: Health promotion, allowing people to gain control over their health. Health prevention by communicating about healthy lifestyles to prevent diseases. Improving the quality of life of patients by promoting their capacity building and advocating for equality in access to quality treatments and innovative care. |
| Activities relevant to the conference of States Parties to the convention on the Rights of Persons with Disabilities: |
WHAT WE DO For Civil Society: Educational campaigns about healthy habits to prevent illnesses and communicate the need for preventive check-ups and health control. Communication of health rights and duties. Medical appointments for free preventive check-ups, donation of medicines. Research and proposal of public health policies in favor of patients. For Patients and caregivers: Personalized psychological assistance. Nutritional counseling. Personalized complementary therapies. Support groups. Education of patients about their illness, the healthcare system and access to healthcare. Health Rights Advocacy. |
| Confirmation of the activities of the organization at the regional, national or international level: |
Esperantra is the first south American patient organization awarded by UICC as Country Champion joining Treatment for All in 2019. We belong to the most prestigious regional and international networks and we are the only organization in the world with a Code of Ethics aligned with the principles of APEC (Asia Pacific Economic Cooperation). More than 2'500,000 people made aware of healthy habits for a healthy life through media interviews. 2003 patients and relatives of patients trained in their disease. 943 patients and relatives of patients trained in health rights in Lima, Arequipa and Cusco. 460 patients received individual emotional support. 915 hospitalized children enjoyed our Volunteer Play Program. 100 university students from Europe, North, Central and South America came to Peru to volunteer for Esperantra in hospitals, helping children with the Play and Learn Program. Donation of oncological medication valued at more than $1'500,000 US dollars to patients. We founded BIORED Peru, in which 21 patient group leaders participate. They have been trained on health rights, public health policies, media training, pharmacovigilance, interchangeability. Patient positioning documents have been submitted to authorities. In collaboration with the Global Alliance for Patient Access GAFPA, the Latin American Patient Summit was organized in Lima, with the participation of 50 patient organizations from the region. They attended the Congress of the Republic and were appointed Guests of Honor, along with the President of the Congress Health Commission, congressmen, Chief of the Social Security Health Technology Evaluation Agency, Representative of the General Directorate of Medicines, Supplies and Drugs, among others. Peruvian authorities were made aware of the importance of focusing public health policies on patients. We founded the Latin American Association against Lung Cancer "ULACPUL", made up of patient organizations from 11 countries, aiming to improve the approach to cancer and especially lung cancer in Latin America. We conducted the study "Living with Hemophilia in Peru 2018". This study is the first of its kind in the country and covered a sample of 100 people, including relatives of children with hemophilia and patients, representing approximately 12% of the total universe of people diagnosed with hemophilia in Peru. We got the draft regulation of rare and high-cost diseases. We were appointed Board Member of ALIBER, Ibero-American Alliance for Rare Diseases. We are the first Peruvian organization and one of 17 worldwide elected by UICC as National Champions for the “Treatment for All” initiative in 2019, with a global commitment to reduce premature mortality from cancer and non-communicable diseases by 25% by 2025. We are leading the NCD movement in spaces such as the UN, as well as the joint work between doctors and patients as a local partner of GAFPA (Global Alliance for Patient Access) in the organization of the Latin American Biologics and Biosimilars Policy Advocacy Summit 2018 and LAPA (Latin America Patient Academy). |
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