Martha Carvalho

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- Brazilian Genetic Alliance -

• Martha Carvalho
• Tania Levy
• 2006 Genetic Alliance Annual Conference

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The Brazilian Genetic Alliance ABG is a
non-profit organization founded in 2005

• STATEMENT
• information and support
• for those with special genetic conditions
• MISSION
• to bring together advocacy organizations, and to
  contribute to make easier for individuals and
  families to get diagnosis, genetic counseling and
  treatment

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• GOALS
• . to serve as a contact center for genetic
  advocacy groups
• . to gather data for a genetic database in
  Brazil.
• . to build up a network of genetic information
• . to leverage the voices of peole living with
  special genetic conditions in Brazil

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Creating an umbrella

•  
• who we are
• ideas
• facts
• the process

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Striving for greater efficiency in a
middle-income country

• BRAZIL
• area of 8,514,215 km²
• 184,038,895 inhabitants
• GDP per capita of 8,100 (2004 est.)

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• Regions vary in their health care capacities
• . some may not have the resources to set up
• appropriate genetic services
• . others provide excellent genetic services
• but need assistance to improve equality
• of access to their services

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What we want to accomplish

• . to promote public and professional
• awareness about genetic conditions
• . to address ethical, legal and social issues in
  our country

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• Trying to establish a cumulative process
• . raising awareness about genetic conditions
• and challenging people to overcome
• indifference
• . creating a sense of belonging to the process
• and of being able to make a difference
• . providing feedback to make people feel
• responsible for results and energized
• by success

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Why is it important to join an alliance?

• Unity strengthens associations,
• provides organizations sharing experience
• and helps to increase the visibility of
• achievements of different advocacy groups.
• Participation of each association
• is fundamental to figure out the reality
• of individuals living with genetic conditions.

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What is done?

• 21 Advocacy Organizations
• had joined the ABG
• 540,000 affected individuals are estimated
• to be represented at ABG

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Characterizing our membership

• . reasons for starting each group or association
• . year established
• . mission statement
• . members of each group/association

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Characterizing our membership

• . genetic conditions each group or association
  serves
• . biggest obstacles to overcome when establishing
  each group/association
• . biggest challenges the group faces now
• to sustain the association

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. reasons to start

• address personal needs
• collect information and resources
• willingness to speak on behalf of their
• affected family members and to share
• feelings and experience with others

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. year established

• 1997 2006 75
• before 1996 25

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. mission statement  

•  92,5 of the associations
• were established with the purpose of
• supporting families and
• spreading the word
• about the genetic condition

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. members of these associations

• 100 of the associations have families with
• affected individuals among their members
•  
• 85 of the associations have also
• professionals as members

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. genetic conditions served

• Angelman syndrome
• Cystic Fibrosis
• Epidermolysis Bullosa
• Fragile X syndrome
• Gaucher disease
• Hemangioma and Lymphangioma
• Hereditary Ataxias
• Huntington disease
• Marfan syndrome
• Metabolic diseases

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. genetic conditions served

• Metachromatic Leukodystrophy
• Mucopolysaccharidosis
• Muscular Dystrophy
• Osteogensis Imperfecta
• Rett syndrome
• Rubistein-Taybi syndrome
• Sickle Cell Anemia
• Thalassemia
• Turner syndrome
• Williams syndrome

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. biggest obstacles in the beginning

• 61,5 of the associations
• said it was bureaucracy
• It was also said they had a limited
• amount of time available and
• were afraid to let anyone know
• they had an affected family member

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. biggest challenges at this moment

• 92,5 of the associations
• said fundraising and
• keeping members engaged

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comparing / contrasting different countries

• . culture
• . structure
• . resources
• . willingness

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Two personal stories

• . the genetic condition
•  
• . the catalyst
•  
• . the process
•  
• . the results

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1

• . Rare genetic condition
• . Lack of information
• . High cost medication
• . Starting a parent support
• . Joinig the alliance

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2

• . Very common genetic condition
• . Lack of information
• . Multidisciplinary interventions
• . Starting a parent support
• . Joinig the alliance