We are incredibly proud to announce that we are an official support organisation for the Generation Study. Funded by the Department for Health and Social Care (DHSC), this groundbreaking initiative is sequencing the genomes of 100,000 newborns to explore how genomics can shape the future of newborn screening in the UK. 

As the study progresses and returns results to thousands of families, we are honored to be listed in the study’s information materials as a recognised source of support. Navigating a suspected rare condition can be an overwhelming experience, and our inclusion ensures that families participating in the Generation Study have direct access to our guidance, resources, and community when they need it most. 

We are closely following the study's progress as it approaches its recruitment goals for early 2027 and look forward to what these vital findings will mean for the broader rare disease community.

The Generation Study: Frequently Asked Questions

Is the study still accepting new families? 

The Generation Study is a time‑limited research study designed to generate evidence for the future of newborn screening. To ensure the study is evaluated in a structured and well-governed way, enrolment is entering a planned closure phase. If you are an expectant parent who is no longer able to join, please know that you are not being singled out. This is simply a planned transition as the study reaches its goal of 100,000 participants.

We are already enrolled. Will we still receive support? 

Absolutely. Supporting families remains our priority, and the study’s commitment to you continues beyond the recruitment phase. You will still receive your results and updates, and you retain the right to withdraw from the study at any time. As a recognised support organisation, we are here to provide trusted guidance, resources, and community for your family every step of the way.

What happens after the study ends? 

Once recruitment closes, the evaluation and analysis phase will continue. The findings from this study will provide crucial evidence to help national policy bodies make future decisions about newborn screening. For the most up-to-date information on the study's progress, we encourage you to visit the official https://www.genomicsengland.co.uk channels.

We are absolutely thrilled to introduce the dedicated volunteers who are committing their time and talents to help us grow. Meet the team! 

Ms Sahaana Shankar | Graphic Designer

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.

Ms Fatima Faisal | Graphic Designer

Fatima is a Graphic Design student at Middlesex University with a strong interest in using design for positive social impact. Drawing from her studies, volunteer work, and creative projects, Fatima is dedicating her skills to create meaningful visual content that connects with people and brings our charity’s mission to life.

Mr Kalyan Korapati | Social Media Manager

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.

Ms Madduri Priyanka | Corporate Partnerships Outreach

Priyanka is an MSc International Project Management student at York St John University, London, with over three years of experience in customer support and client communication. She is passionate about building meaningful relationships, helping people, and creating positive community impact.

Ms Muskan Abedin | Corporate Partnerships Outreach

Muskan is a Public Health postgraduate student with a background in clinical medicine. With experience spanning hospital settings, community health, and digital health communication, she brings a well-rounded and highly valuable perspective to health advocacy.

Ms Nia Beth | Researcher & Writer (Grant Funding)

Nia is an MA student in Contemporary History and International Politics with a specialisation in human rights. Dedicated to creating positive, long-term change, she is passionate about contributing to global conversations. Nia brings valuable skills in communications, advocacy, and community health awareness to support the people we serve.

Ms Soyinglo Shitiri | Researcher & Writer (Grant Funding)

Soyinglo is currently pursuing an MSc in Development, Disorders and Clinical Practice at the University of York. With a strong foundation in clinical psychology and practical experience as a SEN Teaching Assistant, she is deeply passionate about neurodevelopmental conditions and reducing barriers to care in underserved communities.

Thank you to everyone who is supporting our launch. Stay tuned to "Our Journey" for more updates as this incredible team brings our vision to life!

As we actively raise vital funds to officially launch our core services, we are absolutely thrilled to share a massive milestone with you: Bruck Syndrome has been officially recognised by HM Revenue & Customs (HMRC) as a charity for tax purposes. We are now formally established as a Charitable Incorporated Organisation (CIO), with our official charity reference number (ZD64797) taking effect from February 2026.

What this means for our community

Our ultimate aim is to relieve the need and protect the health of individuals, their families, and carers affected by Bruck Syndrome. Earning our official charity status is a foundational step that directly strengthens our ability to deliver on our key charitable aims, including:

• Maximising Every Donation: Being recognised for tax purposes allows us to eventually claim back tax on eligible donations (such as through Gift Aid), meaning the generous support we receive will go even further toward funding our vital services.

• Building Trust and Credibility: Formal recognition from HMRC demonstrates that we are a regulated and transparent organisation. This cements trust with our donors, partners, and the medical professionals we aim to collaborate with.

• Unlocking New Opportunities: Operating as an official CIO opens doors to crucial new avenues of funding, including grants and trusts that are only available to registered charities, giving us the resources we need to advocate for research and promote knowledge.

Building a better future, together

We have a clear vision for the future: a world where no one feels alone, everyone has access to help, and knowledge leads to better care. Securing our official status as a Charitable Incorporated Organisation is a huge step toward making that vision a reality for children like Elisa and families everywhere facing this diagnosis.

Thank you to everyone who is supporting our launch. Stay tuned to "Our Journey" for more updates soon!

As we actively raise vital funds to officially launch our core services, we are absolutely thrilled to share a massive milestone with you: we are officially a member of Genetic Alliance UK.

What this means for our community

Our ultimate aim is to relieve the need and protect the health of individuals, their families, and carers affected by Bruck Syndrome. Joining Genetic Alliance UK connects us to a powerful national network of charities, advocates, and experts dedicated to supporting those with rare genetic conditions.

This partnership directly strengthens our ability to deliver on our key charitable aims, including:

• Raising Awareness: We can reach a wider audience to highlight the realities of Bruck Syndrome and its implications for individuals and their families.

• Promoting Knowledge: Being part of this alliance helps us promote understanding and acknowledgment of the condition within the medical profession and wider support services.

• Encouraging Research: It opens doors to collaborate and advocate for research into potential treatments.

Building a better future, together

We have a clear vision for the future: a world where no one feels alone, everyone has access to help, and knowledge leads to better care. Partnering with Genetic Alliance UK is a huge step toward making that vision a reality for children like Elisa and families everywhere facing this diagnosis.

Thank you to everyone who is supporting our launch. Stay tuned to "Our Journey" for more updates soon!