Rare Leader: Angela Patricia Chaves, President, Federación Colombiana de Enfermedades Raras

July 12, 2018

The Basics
Name: Angela Patricia Chaves

: President

Organization:  Federación Colombiana de Enfermedades Raras (Columbia Rare Disease Federation)

Disease focus: We work for all rare diseases and all patients with rare diseases in Columbia.

Headquarters: Bogeta, Columbia

How did you become involved in rare disease: My young daughter Lucy died from an ultra-rare disease metachromatic leukodystrophy. She was diagnosed at the age of 2. She was a normal girl and began to lose everything. It is a neurodegenerative disease. She lost the ability to walk, to see, to eat by herself. We lived with the disease for ten years before Lucy died in 2009.

Previous career: Dentist and information sciences professional.

Education: Doctor of Dental Science from The Universidad El Bosque and a professional degree in Library and Information Sciences from Universidad del Quindío.

The Organization
Organization’s mandate: To bring together and represent people with rare diseases to achieve inclusion and integration in the social system.

Organization’s strategy
: We work in three areas. We work on the construction of public policy for rare diseases in Columbia. We work for awareness and alliances with the government and scientific societies. And we work with leaders of rare disease organizations to improve their capabilities and bring services to rare disease patients.

Funding strategy: We work with the health industry and we look for donations from international corporations, embassies, and rare disease organizations.

What’s changing at your organization in the next year: We want to improve public policies. We are working on regulations for the accreditation of centers for rare diseases and the policies for the routes to diagnosis and treatments of rare disease. Also, we are working to improve access to innovative drugs that have high costs. Access to treatments through the health system in Columbia is not good and we have to empower groups to get access for patients.

Management philosophy: Always be constructive and bring solutions. We bring new ideas to solve problems. We stress values like honesty and transparency, so people can have trust and confidence.

Guiding principles for running an effective organization: We want to have a social impact. We work hard to make changes to Columbian culture. We have defined goals and objectives and give great importance to information and knowledge. And human talent is important. The design of the organization is flexible to adapt to the environment.

Best way to keep your organization relevant: We have achieved things other organizations in Latin America don’t. Our strength is in public policy. We are strong in institutional relations. People trust us, and we have great relationships

Why people like working for you: Most of them are people who have the experience of living with a rare disease. They are motivated to change the reality of living with rare disease. We have a lot of solidarity between us. The people who don’t have the experiences see the motivation and want to help.

Mentor: There are other rare institutions that have achieved things that inspire us.

On the Job
What inspires you: People, patients, and families inspire us to achieve more. You see what you can do as a team and change policies and empower patients.

What makes you hopeful: We have hope in seeing the things in a practical way help people. When you change the life of someone, you get hope from that.

Best organization decision: To invest a lot in education, information, and knowledge. We have to be resourceful and creative because we don’t have a lot of money.

Hardest lesson learned: Teamwork and relationships are more important than anything else.

Toughest organization decision: People who were motivated and were great but had to let them because we didn’t have the money to keep them.

Biggest missed opportunity: The lack of structure to get funds from big organizations or foundations we missed because we didn’t have people inside dedicated to this.

Like best about the job: I get to meet a lot of people. My work is never boring. I have to travel a lot. I love policy.

Like least about the job: I don’t like egos. The thing I hate most are people who want to say, “I did it.” And I don’t like that some stakeholders put organization in competition with each other to compete for resources.

Pet peeve: I hate when meetings run long and we don’t get to the point. Also, if someone lies, I’m going to be angry about that.

First choice for a new career: I would like to work in public policy and work with information.

Personal Taste
Most influential book: Why Nations Fail: The Origins of Power, Prosperity, and Poverty by Daron Acemoglu

Favorite movie: Pride and Prejudice—I love romantic comedies.

Favorite music: Salsa and ‘80s and ‘90s pop

Favorite food: Hamburgers, pizza, and Columbian food.

Guilty pleasure: Chocolate and seeing a movie on a mid-week afternoon.

Favorite way to spend free time: Take out my dog, read, and watch movies on Netflix.

July 12, 2018

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