RARE Daily

Rare Leader: Patricia Weltin, CEO, Beyond the Diagnosis

October 24, 2019

The Basics
: Patricia Weltin

Title: CEO/Founder

Organization: Beyond the Diagnosis

Social Media Links:

Disease Focus: Rare Diseases

Headquarters: Rumford, Rhode Island

How did you become involved in rare diseases: My children have Ehlers-Danlos Syndrome

Previous: Financial analyst working in the manufacturing sector

Education: B.S. in Finance from Bryant University

The Organization
Organization’s mission
: Beyond the Diagnosis unites art and science to raise awareness, educate, and inspire research and innovation of treatments for children living with orphan and neglected diseases.

Organization’s strategy: Use visual arts to inspire, connect, and engage all stakeholders in the rare disease space and beyond.

Funding strategy: Like most umbrella organizations, we fund it through pharma companies and others. We don’t generally do events because trying to get people who don’t know rare diseases involved in rare diseases is extremely difficult. Now that we’re established, we are looking to art grants and things like that.

What’s changing at your organization in the next year: We are looking to bring the exhibit to venues around the world.

Management style
Management yhilosophy
: No organization is perfect, but every bad situation is an opportunity to learn. We are all in this together, and most often great initiatives are created by many people throwing out ideas. I’m a big fan of creating idea groups for all aspects of the exhibit. This exhibit belongs to the rare disease community and they should have a say in how we share it.

Guiding principles for running an effective organization: Always be open, always try to learn from others, and always remember that the only boss at Beyond the Diagnosis is the rare disease community. I work for them.

Best way to keep your organization relevant: Listen to the people who are living this unimaginable life and use your programs to meet their needs.

Why do people like working with you: I think people in this space know that I am truly passionate about helping, that my desire to move the needle for rare is deeply personal to me.

Mentor: Too many to list. So many rare disease patients and parents are extraordinary.

On the Job
What inspires you
: I’m lucky that I am surrounded every day by beautiful portraits of children who fight every day. They inspire me to keep doing all I can.

What makes you hopeful: Seeing how all people react so positively to the exhibit. We need all people to be engaged in our cause.

Best organization decision: Deciding to keep going despite a mountain of obstacles.

Hardest lesson learned: Board members aren’t always aligned with your organization’s mission, so it’s important to ask tough questions to prospective Board members.

Toughest organization decision: Letting go of my original business model, when a larger organization took it over.

Biggest missed opportunity: Not fulfilling my original plan to create a patient-centric, state- based umbrella organization.

Like best about the job: Working with our BTD families and artists. It’s magical!

Like least about the job: It’s very difficult when a child in the exhibit passes. It feels like losing a family member.

Pet peeve: People who are late.

First choice for a new career: Ehlers-Danlos researcher

Personal Taste
Most influential book
: Look Homeward, Angel by Thomas Wolfe

Favorite movie: In Bruges

Favorite music: Alternative rock

Favorite food: Margherita pizza

Guilty pleasure: Coca-Cola every morning

Favorite way to spend free time: Games with my daughters. We are all competitive, so it gets a little crazy. I enjoy reading outside, travel, politics, and learning something new about the world every day.

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