It all started with a sensitive eye from Dr. Régia Celli Patriota de Sica who captured beauty, beyond skin and through the exhibition “Beyond the Skin: the Beauty of Soul and Family”, unveiled beauty and love, using photography as a tool for social mobilization, bringing to light the struggle to end prejudice against people suffering from skin diseases. The tests were carried out among children and mothers.
The exhibition Beyond the Skin – the Beauty of the Soul and the Family, was exhibited by the 1st. time at the Pinacoteca of the Associação Paulista de Medicina – APM, with the support of the Paulista Association of Medicine and the Brazilian Medical Association (AMB).
With 17 photographs, Dr Régia Celli Patriota de Sica, showed the drama experienced by those families and sought to raise reflections regarding the discomfort and rejection that the population still has in the face of skin diseases, even though they are not contagious, as well as contributing to fight discrimination.
When choosing as protagonists of her photographs children with skin diseases, emphasizing, above all, their relationship with family members, Régia Patriota draws attention to the need to look beyond the surface.
The knowledge of the drama experienced by those families touched the hearts of many people, especially a group of social entrepreneurs, formed by professionals from different areas.
The 2nd Exhibition was held in the auditorium of the Secretariat for the Rights of People with Disabilities of the State of São Paulo as part of the program of the 1st Meeting of the Social Rights Protective Action Network.
Brazil and was seen by more than 60 thousand people. Just as there was participation in events, congresses and programs in the various social media, production of four video lessons with the support of the Department of Dermatology at Hospital das Clínicas, University of São Paulo, Production of the film “Além da Pele”, the creation of the National Hereditary Skin Disease Awareness Day, campaigns against prejudice to generate information for Brazilians about these congenital skin diseases.
Exhibition Beyond the Skin the Beauty of the Soul and the Family in the press.
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To continue the project of informing and sensitizing the population, aiming to contribute to ending prejudice against people with skin diseases; to help remove thousands of children and adolescents from the enclosure, and also to provide adequate medical, psychological and social assistance so that people with these diseases have a better quality of life, the Brazilian Institute of Support to Genodermatoses – Ibagen was created, on December 4, 2013.
Ibagen carried out a campaign on social media and supported a project carried out by the São Paulo Medical Association and the São Paulo State Department of Culture, through ProaC-SP, sponsored by the Aché Laboratory, to exhibit the “Beyond Skin a Beauty of the Soul and the Family”in the following spaces: Condomínio Conjunto Nacional; Youth Cultural Center and Memorial of Inclusion, as shown below.
Régia Celli Patriota de Sica – Chairman of the Board of Directors
Richard Freeman Lark Jr. – Chairman of the Fiscal Council
With the support of the Gol Institute, the Exhibition Beyond the Skin – the Beauty of the Soul and the Family was exhibited at Congonhas Airport and five other airports. The press disclosed what contributed to the increase in visitation.
In 2016 Ibagen starts a new phase of the campaign to combat prejudice against people with skin diseases, with the launch of the video “Beyond the skin”.
film aims to combat prejudice against people with skin diseases and is an important tool for raising awareness about genetic diseases with cutaneous manifestations, such as ichthyosis, bullous epidermolysis, xeroderma pigmentosa and ectodermal dysplasia, non-contagious diseases for which there is no cure .
The repercussions of the film were unimaginable inside and outside the dermatology scene, it impacted several places in Brazil and entered the Publicittá Online / Inteligemcia / Uiara Zagolin / Blog Tânia Muller / Brasil Fashion News / M. de Mulher magazine (Ed. Abril) / SP em Voga / SBD – Brazilian Society of Regional Dermatology São Paulo / Facebook SOS EB Kids / Culture in Sampa / Mega Buzz / Pharmaceutical Blog / On the Side of Here / Afro Brazilians / Creation Club / Correio Nagô – Salvador Bahia / Facebook Magazine Health – M. de Mulher Abril / Caneta e Café / Radio Rio de Janeiro website (AM 1400) / Facebook of the Panamerican School – Art and Design School of SP (attached screen print) / Facebook I Woke Up Disposed / São Paulo Reporter (TV Brasil) / 29 Horas Magazine / Balanço Geral – Rede Record (Picture ‘Balançou Você’ shown today 05/09/16) / Gol Magazine.
On October 1, 2019 we had the joy of making a big dream come true – inaugurating the new IBAGEN headquarters, which in 2018 adopted the fancy name of Casa Santa Teresinha de Lisieux. The house is located next to the Santa Teresinha Church, in Higienópolis. The logo was also changed to reflect the fancy name Casa Santa Teresinha.
In addition to high visibility in various media, interviews with television and radio programs, as well as newspapers, Dr. Régia Celli Patriota de Sica also personally visited the National Congress in Brasilia, capital of Brazil, in an incessant search to maintain the quality of life of people with genodermatoses, and met several leaders willing to support the Casa Santa Teresinha project.
Since 2013, we have carried out several actions, but the journey to promote the quality of life of these children, adolescents and their families is continuous.
In 2020, IBAGEN was recognized and certified by the Ministry of Justice as a Civil Organization of National Public Interest (OSCIP – Civil Society Organization of Public Interest). The recent approval of IBAGEN as a non-profit institution, certified and recognized by the municipal council of children and adolescents has made it possible to raise financial support from private companies and government resources. The projects under development will focus on an integrated multidisciplinary network to provide comprehensive assistance to participants with genodermatosis and training of health professionals involved in patient care.
A Working Group for the Elaboration of the Protocol of Guidelines for the Diagnosis, Follow-up and Treatment of Bullous Epidermolysis (EB) and other Genodermatoses of the Neonatal Screening and Comprehensive Care Program for People with Rare Diseases of the State of São Paulo was also established (Resolution SS – 77, of 20-9-2017) – four professors from HCFMUSP (Hospital das Clínicas, Faculty of Medicine, University of São Paulo), who are also founding members of Ibagen are part of the Working Group.
Prejudice is still one of the major obstacles in the fight against skin diseases. That is why it is so important to bring information on how to treat them, minimizing the emotional and social damage caused to the victims of the disorder.
Extend your hands to this cause.