SPARC grant awardees - Meet Luciana from Brazil

17 August 2016

41 year-old Luciana Holtz is the founder and president of the Instituto Oncoguia - one of twenty organisations receiving a SPARC grant which aims to improve the quality of life of metastatic breast cancer patients in Brazil.

The Seeding Progress and Resources for the Cancer Community (SPARC) Grants - launched in partnership with Pfizer - aims at empowering organisations across the world to address the specific needs of metastatic breast cancer (MBC) patients in their native country and local communities.

Through a series of portraits, UICC would like to introduce the SPARC awardees and highlight some aspects of their individual experiences. Today, meet Luciana Holtz from Brazil.

Specialised in psycho-oncology, Luciana has worked on several projects to improve cancer patients´quality of life, both through her private practice and public institutions.  

Her main project Oncoguia – a far-reaching, informative and interactive online portal for cancer patients – started in 2003 and soon became a national reference for cancer patients in Brazil. After six years of positive results, in 2009, she founded Instituto Oncoguia in conjunction with a group of healthcare professionals and cancer survivors. This non-profit organisation works to improve cancer patients’ quality of life by promoting and providing access to information crucial to furthering patient rights.

What did being part of the SPARC program allow you to achieve that you otherwise could not have?

Getting patients from different regions in Brazil involved was a very challenging part of the project. The SPARC grant made training them efficiently as well as producing necessary support materials possible.

What is your greatest achievement related to the SPARC project so far?

Our greatest achievement has been the launch of the Network Plus Life (Rede + Vida) initiative as well as the educational materials that we developed for this network. Network Plus Life has recently brought together fifteen metastatic breast cancer patients from different regions of Brazil for a two-day training so that they become More Life ambassadors able to provide other MBC patients in Brazil with additional support and quality information.

Who has inspired you in your life and why?

The strength and vigor of cancer patients inspire me, and the urge to help them fight this battle led me to found Instituto Oncoguia. It is very difficult to face a disease alone, and Instituto Oncoguia has been created to accompany metastatic breast cancer patients in their cancer journey. Now that I am closer to MBC patients, I am even more conscious of the challenges they face and more motivated to help them live longer and enjoy the best possible quality of life.

What do patients tell you when you engage them on the project? What do they think of the project?

They love the project. They are very happy to help other patients who lack access to quality information or to someone in the same situation who can support them and help them find the daily strength to continue on.

What type of support can metastatic breast cancer patients find on the dedicated webpage of the Oncoguia Portal?

Our dedicated page to advanced and metastatic breast cancer provides the following resources:

  • Detailed information about the different types of breast cancer. We consider this information crucial since not every patient knows their own type of breast cancer and often patients do not have access to specific information on their cancer;
  • Video interviews with experts and patients’ testimonials;
  • Template questions that help the patient get prepared for a medical consultation;
  • Information on clinical trials, pain relief and quality of life.

For more information about the SPARC initiative and related projects, please click here.

Last update: 
Tuesday 16 May 2017
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