Many organisations have refocused on their core mission during the pandemic and Genetic Disorders UK has been no exception with several changes announced this week.
The first is that Genetic Disorders UK is now Gene People.
Refocusing and renaming our charity was not a decision we took lightly. It demonstrates our commitment to the individuals and families living with the impact of genetic conditions across the UK.
Genetic Disorders UK (GDUK) was founded in 2012 and has grown to become a key source of information and support for both those affected by a genetic condition, and the charities and patient groups that support them. The trustees conducted a major review of its purpose by the trustees, leading to a new and exciting programme of change across all parts of the charity.
The Jeans for Genes Campaign (and grant programme) and Primary Immunodeficiency UK divisions have transferred out of GDUK to be run independently under new leadership.
The focus going forward will be on the remaining support and information-provision division. At the core of Gene People is the unique genetic counsellor-led helpline. The high-quality services provided will continue to grow in response to increasing demand, and over time Gene People will look for new ways to help the community of patient support organisations within the renamed Gene People Partnership Network.
“We have always put patient and family needs at the heart of everything we do.” said recently appointed chief executive Samantha (Sam) Barber, “We now want to grow and develop new and exciting ways of supporting the individuals and families we serve, and the patient groups who support them.”
“The publication of the new Rare Disease Framework by the Department of Health & Social Care gives us a great opportunity to support patients and families with genetic conditions.” Sam Barber said. “The team at Gene People are ready to rise to the challenge of working with our friends and allies to empower our community to better support patients and families with genetic conditions.
“I am delighted to join Gene People at this pivotal time for the charity and the sector. My previous experience at the Batten Disease Family Association and the Tuberous Sclerosis Association have demonstrated to me how vital patient organisations and groups are. They provide support, sometimes grants to those in need, fund research, and are key partners within the drug discovery process at all stages. The pandemic has proven the need for the services they give their communities, but it is hard work to be a patient organisation and I am determined that Gene People will help them to thrive.”
The team at Gene People are ready to rise to the challenge of working with our friends and allies to empower our community to better support patients and families with genetic conditions.
The changes do not stop there with a new Chair of Trustees with a long history within the sector.
Incoming Chair of Trustees, Alastair Kent stated “Genetic Disorders UK has an honourable tradition of providing timely help. The new name reflects our determination to continue to provide a patient- and family-centred focus to the work we do, and I am confident that Gene People will be a force for change in supporting those with genetic conditions.”
The top priorities for the new team at Gene People are promoting the Genetic Counsellor-led Helpline, and to increase the number of patient groups and organisations in the Gene People Partnership Network.
Alastair explained, “These two priorities are the driving pillars of our work. The Helpline complements other NHS services so well as our team can take time to make sure callers understand all that they need to. We have great feedback for this service so promoting it is fundamental to us. It is now available for four-days a week, which is a positive development.
We know that we can offer more and different things to the patient organisations and groups in the Partnership Network. We consulted with some partners at the very beginning of the review and have implemented some of the ideas for additional support already. There is more we can do, and we are continuing to refine ideas based on feedback from organisations – so expect to see new benefits announced in the coming months! Everyone at Gene People is very clear that we do not want to duplicate the efforts of other organisations in this field and are seeking to work together with others to create as much value for the sector as possible.
Current benefits of the Gene People Partnership Network include:
• free listing on the Gene People website with logo and link to the patient group website or page
• Gene People Partnership Network logo for patient groups to use
• exclusive access to the Gene People Partnership Network Facebook Group
• access to member-only Gene People Partnership Network virtual and in-person events
• invitations to participate in consultation responses co-ordinated by Gene People
• Discounted places at Gene People events where fees are charged.
A new name, new focus and new leadership all combining to bring new energy to this well-established charity.
The Gene People Helpline is available Mon-Thurs 9am-5pm via voicemail and email:
Organisations interested in joining the Gene People Partnership Network should use the button below to visit our website for more details and the simple form to complete.
Rare Revolution Editor