Help us improve life for people with Bruck Syndrome.

About

Help us improve life for people with Bruck Syndrome.

As a registered charity (Charity No. 1216729), our services include providing financial assistance through grants, developing reliable educational resources, funding important research, and building a strong community through our support services.

Our Mission and Objects

Our mission is to enhance the lives of individuals and families affected by Bruck Syndrome. As a charity, our work is guided by our three formal charitable objects, which are set out in our governing document:

To preserve and protect the health of individuals affected by Bruck Syndrome by providing and assisting in the provision of facilities, support services, and information not normally available from statutory authorities.

To advance the education of the public in general (and particularly among medical professionals) on the subject of Bruck Syndrome and its implications for the individual, their family, and the public.

To promote and support research into the causes, nature, treatment, and management of Bruck Syndrome, on the condition that the useful results of such research are disseminated for the public benefit.

Meet the Team

Mr Mahdi Koutizadeh

Chair / Trustee

As the father of Elisa, who lives with Bruck Syndrome, Mahdi has a deep, personal understanding of the challenges families face. He is driven to ensure that no family has to navigate this journey alone and is committed to building a charity that provides real, practical support.

Mrs Zahra Koutizadeh

Trustee

Zahra has dedicated her career to public service as a police officer in London. She is bringing that same commitment to protecting vulnerable people to her role as a trustee, ensuring the charity operates with integrity and has a real impact on the community it serves.

Mr Farzad Kootyzadeh

Trustee

Farzad's role as a police officer is built on a foundation of public service and a duty to protect others. He is passionate about extending this commitment to the Bruck Syndrome community, helping to build a strong and supportive organisation for families in need.

Mrs Hadis Sharifian

Trustee

Hadis is a MSc Construction Project Management student with a strong interest in organisation, planning, and project delivery. As a trustee, she aims to use these skills to support the charity’s growth and help ensure it delivers meaningful support to the community.

Ms Sahaana Shankar

Volunteer

As a graphic designer, Sahaana is driven by a deep curiosity about how people feel. She believes that design is a powerful tool to quietly support others and bring clarity to complex journeys. She is volunteering her incredible talents to help us communicate intentionally and keep our charity’s message human and accessible.

Mr Kalyan Korapati

Volunteer

Kalyan is an MSc Data Science and Analytics student with a strong background in digital marketing, web development, and content creation. He is passionate about using data-driven insights and engaging digital content to build supportive and accessible online communities. As our Volunteer Social Media Manager, Kalyan is dedicating his technical and creative talents to amplify the charity’s voice, ensuring our message reaches and resonates with the families who need it most.

Our Partnerships & Affiliations

To maximise our impact and ensure we deliver the best possible support, the Bruck Syndrome Charity is proud to collaborate with leading national and global organisations. As a member of Genetic Alliance UK, we are part of a wider network advocating for individuals with rare genetic conditions, helping us share knowledge and amplify our community's voice.

We also partner with Google for Nonprofits to power our operations and raise awareness , while our integration with trusted platforms like JustGiving and the PayPal Giving Fund ensures that every donation we receive to fund our grant-making and research programs is processed safely, securely, and efficiently.