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CML Support Groups: Members of the CML Advocates Network

The CML Advocates Network connects patient organisations supporting patients and families affected with Chronic Myeloid Leukemia (CML)

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Brasil: Associação Brasileira de Linfoma e Leucemia, "ABRALE"

CONTACT INFORMATION:

Mailing/Postal Address:
Rua Pamplona
518 - conjunto 51/52
Jardim Paulista - Såo Paulo - SP
01405-000

Telephone: +55 11 3149 5190
Facsimile: +55 11 3149 5180
Email:
Website: www.abrale.org.br

KEY CONTACT:

Name: Merula Steagall
Position: President

BRIEF DESCRIPTION OF ORGANIZATION:

The Associaçåo Brasileira de Linfoma e Leucemia, "ABRALE", is a non-profit, non-governmental organization. It was founded in September 2002 and is managed by patients and their families. It's the only organization that covers the entire Brazilian territory.

ORGANIZATIONAL OBJECTIVES:

Divulge information and provide support to lymphoma and leukemia patients, in addition to mobilizing
partnerships so that the best treatment is available in the country.

KEY PROGRAMS:

  • Educational problems: Monthly patient meetings; the International Lymphoma and Leukemia
  • Conference (annual); and the Oncology-Hematology Sessions (quarterly).
  • Publications: 12 guides on lymphoma and leukemia and the quarterly newsletter “Enfoque Vida” featuring novel treatments and tips to enhance patient quality of life.
  • Scientific/specialty committee: among its members are the most renowned physicians and health professionals in the country.
  • 0800 773 9973: information and clarifications. Toll-free from anywhere in Brazil.
  • The ABRALE Portal: www.abrale.org.br, a benchmark in oncology-hematology.
  • Effective political action.
  • A national registry of treatment centers and specialists.
  • Psychological and legal support to patients and their families.
  • The MEDULA ("Marrow") Project to increase the number of bone marrow donors in Brazil.
  • International partnerships.
  • Legal department: to provide support to access to treatment.

President's profile

Merula Steagall, 47, graduated in Business Administration from the Pontifi¬cia Universidade Catolica with post-graduate studies in management of non-profits at the Fundaçåo Getulio Vargas, both in Sao Paulo, Brazil. She is the president of two organizations, i.e., the Associaçåo Brasileira de Linfoma e Leucemia ("ABRALE") and the Associaçåo Brasileira de Talassemia ("ABRASTA"); she also sits or has sited in the boards of international organizations such as the Lymphoma Coalition and the Thalassaemia International Federation ("TIF"). Mrs. Steagall is a patient of thalassemia major,mother of three wonderful kids and is an active player in negotiations with the federal government to enhance the Brazilian public health policies; she also seeks partnerships with private companies to ensure that the best treatments are made available to patients in the country. In 2006 she has actively help form and leads Alianza Latina, a network of aprox 70 groups in South America that aims to improve the programs and management of ngo's that represent people with blood disorders , cancer and chronic diseases in the continet. 
Abrale's mission:"achieve excellence and humanization of the treatment and quality of life for people with blood cancer and thalassemia in Brazil, through research, production and dissemination of knowledge, political mobilization and support to patients and their families."

The president's word

Dear Friend,

We're happy to welcome you to our website in order to make you feel as part of our large family.Please let us tell you how our organization started and what we actually do. Due to my own life and professional experience I was invited to lead the initiatives of Associaçåo Brasileira de Talassemia ("ABRASTA") since Sept 2000 . In September 2002, we followed suggestions of our Ministrer of Health and of some physititans involved with our organization , and we founded ABRALE - Brasilian Leukemia and Lymphoma Society. Our intention was to contribute with the construction of a fair health system in hematology , improve the access to the ideal treatment and have an impact on the quality of life of patients in Brazil. We had a dream to make exceptions a rule ,as far as complex hematological therapies are concerned.

We began to bring together important stakeholders and the built efforts and inspiration of all those who somehow had contributed to the advancement of diseases such as lymphoma and leukemia towards their cure. We consolidated our communication with the Ministry of Health, the ANVISA, the INCA and other governmental bodies. We have become familiar with the key treatment centers and invited the most prestigious oncologists-hematologists to join our Medical Scientific Committee. As we came to realize the importance of "global" treatment, we created multidisciplinary sub-committees and put together experts from different areas that also have an important role in blood cancer treatments.

Currently, our committees include: Psychology; nursing; social work; nutrition; dentistry; occupational therapy and palliative care . Our effort seek to multiply success stories and strengthen the relationship with patients and caregivers. We have intensive efforts of patient support services that include educational initiatives to standardize best practices. & state of art guidelines.

Since its foundation , our organization is guided by our patient needs. Our family has had a rapid growth and in order to meet its increasing needs. We have expanded our legal department and established a public policies group of experts focus on advocacy initiatives. In addition, we have a busy calendar of events, workshops and meetings. Since the begging we dedicated efforts to build a national registry of hospitals for oncologyhematological treatment, of physicians and health professionals active in the field but most important a registry of patients and caregivers which helps us extract important data to analyze the scenario we are working at.

This database helps us joint actions with the Ministry of Health, submit claims that are based on data and also assess patient needs, system gaps and other relevant information that we may want to research .
Many are the projects that make as proud of what we where able to build in the last decade or so. Mainly we have four important pillars that sustain all the initiatives :
• Education & Information
• Patient Services
• Public policies
• Research
At ABRALE, each day means: continuous learning and a chain of friendship. I can't describe the joy , gratitude and the personal satisfaction this very important enterprise brings to me. We hope we can help you with the inspiration to strengthen the faith you have in your heart and make you believe that things don't just happen by chance. You must keep your faith in God, however bleak the current outlook. He will always be with you to offer our help and ease your pain. Where there is a will, there is a way! The most important thing is to keep a positive and courageous.

"Life is wonderful for those who don't fear it." - Charles Chaplin

To learn more and to be part of please visit our website: www.abrale.org.br and www.abrasta.org.br and www.alizalatinahemo.org.br

Merula Steagall



 
   
 

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