RareQoL Consulting

Dr Sondra Butterworth
Dr Sondra Butterworth: Founder of RareQoL

I am proud to be able to provide a platform for individuals and groups whose voices often goes unheard

Dr Sondra Butterworth

Our Dual Role: Experience and Expertise

Welcome to RareQoL Consulting, where expertise meets empathy,  and experience transforms into empowerment.

Our consultancy is built upon the foundation of diverse and rare disease advocates who bring together their unique journeys, specialised knowledge, and a shared passion for making a difference.

We are more than consultants; we are advocates, educators, and allies on a mission to drive change, raise awareness,

and provide unparalleled insights into the world of rare diseases.

RareQoL Consulting
RareQoL Consulting

Communities of Practice

2. Specialised Knowledge and Education

Beyond our personal experiences, we also boast a wealth of specialised knowledge gained through education, research, and professional development. Our team members have backgrounds in medicine, genetics, research, psychology, advocacy, and more, ensuring that our insights are well-rounded, evidence-based, and up-to-date


1. Expertise Through Experience

Our consultants are individuals who have faced the challenges, triumphs, and complexities of living with diversity rare diseases. This unique perspective allows us to provide empathetic guidance, practical advice, and unwavering support to patients, caregivers, and organizations seeking to make a difference.

RareQoL Inclusive Research
Inclusive research


3. Raising Voices for Better Choices

Inclusive Research and Practice

RareQoL Consulting is committed to elevating the voices of those diverse communities, under-served and under-represented groups, and those affected by rare diseases. We advocate for increased awareness, improved policies, and enhanced support networks. By sharing our stories and expertise, we strive to shed light on the challenges faced by the communities we serve, and foster a more compassionate and inclusive society.

Coaching and Mentoring

Our Dual Role: Experience and Expertise

At RareQoL Consulting  we proudly embrace our dual roles as experts through experience and specialists through education and skill development. Our team is composed of individuals who have navigated the challenges of inequalities and rare diseases firsthand, ensuring that our insights are not only informed by research and education but also shaped by the personal realities of those living with these conditions.

RareQoL Consulting - Coaching and Mentoring
RareQol Consulting

RareQoL Consulting - Engagement graphic. hands holding up image of diverse faces
RareQoL Consulting


EDI Service Evaluation

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