With 36 attractions in 25 day event, ABRAF closes in 25 November the first edition of the festival that sensitizes the public about the rare diseases that affect about 13 millions of Brazilians
ABRAF - Brazilian Association of Support to the Family with Pulmonary Hypertension and Related Diseases closes, in 25 November, the first edition of the Festival Raridades, free online event with cultural program marked by the theme of rare diseases.
The initiative was designed to happen in person, but it was readjusted to the online format due to the coronavirus pandemic. The festival brings debates, shows, exhibition and audiovisual content with 30 national and international films, between award-winning short and feature films and productions that portray challenges and overcoming rare disease patients.
On the program are exciting stories and real characters that promote identification with patients of rare diseases like that of climber Chris Bombardier, that has the mission of becoming the first hemophiliac to climb the seven highest summits of the continent. He completed five climbs, but faces the biggest challenge: o Everest. To watch the festival films, it is necessary to register on the Videocamp platform: www.videocamp.com
There are about 7000 rare diseases and less than 5% of these diseases have treatment. People with rare diseases go on for long periods until diagnosis, few treatments and specialist doctors, dificuldades financeiras e estresse emocional. Somente no Brasil, 13 milhões de pessoas vivem com essas enfermidades, according to data from the Ministry of Health.
The event also has a show with 18 oil paintings by artists depicting real patients, children and adolescents with several rare diseases and their families. Artists donated their talent and time to portray patients beyond diagnosis, alegres e cheias de sonhos e planos. A galeria traz a audiodescrição das telas e texto explicativo sobre a doença rara bem como histórico do artista que realizou a obra.
The realization of this festival demonstrates that the capacity and talent of patients go far beyond diagnosis. The event appropriates different artistic languages to unite patients and people who are not rare in a dip in so many inspiring stories and experiences that allow us to better understand the world, learn to respect differences and exercise empathy.
ABRAF - Brazilian Association of Support to the Family with Pulmonary Hypertension and Related Diseases is a private non-profit entity, whose goal is to support the community affected by Pulmonary Hypertension and Related Diseases, through awareness, support and promotion of public policies. The organization was founded by Paulo Menezes, on 27 October 2006. His upbringing was stimulated by a personal drama experienced by him and his daughter, Paula Menezes (current president): after diagnosis of Pulmonary Hypertension (rare disease) by Maria Cristina (founder's wife) in 2005, the family found themselves completely helpless and without a voice before the government to demand access to treatment.
Realization: ABRAF, Special Secretariat of Culture, Ministry of Tourism and Federal Government
Project supported by the Culture Incentive Law
Partnership: Hunter House
Sponsorship: Bayer, Biomarin e Takeda
Support: Aliber, SBGM - Brazilian Society of Medical Genetics and Genomics, Association Rarities, United for Life, CDD – Chronicles of Daily Life and Multiple Friends for Sclerosis.
|Service - Festival Raridades|
|By 25 th November of 2020|
|Online and free|
|Age rating: free (with the exception of the films “Deboned” and “Ilegal”, with age indication of 12 years)|
|ABRAF Social Networks|