Gene People

🌟 Birthdays are a time to celebrate and to give back. If you're looking for a meaningful way to mark your special day this year, consider hosting a birthday fundraiser for Gene People. Every donation makes a difference. Let's make your birthday count by spreading good for people living with genetic disorders 🎂💖 #BirthdayFundraiser #SpreadKindness

Happy New Year from Gene People! We look forward to supporting even more people caring for and living with Gene conditions in 2025! Together, we are Gene People

We are happy to share with you an easy read and accessible piece co-written with patient advocates around patient self-advocacy for rare disease

Rare Disease Day is 2 months today! What will you be doing to mark the day? Will you be raising awareness or fundraising? If you're considering a fundraiser for Gene People then we would love to support you, so get in touch!

Thanks so much for your support this year. On behalf of the trustees, volunteers and staff, we wish you a Merry Christmas and a Happy New Year.

New gene therapy could alleviate chronic pain, researchers find

There has been a lot happening during 2024 that will have a long-term impact on people living with genetic conditions and their families and carers. The Gene People team have been working hard to make sure that the experience of our community is reflected in policy consultations and at conferences. At the same time, the free to use helpline service has been taking calls and answering emails from anyone affected by a genetic condition. The network of condition-specific support groups continues to grow, and we have provided opportunities for partners in the network to learn and improve their skills in influencing this year. There has been a huge amount of work all focused on improving the lives of people living with genetic conditions. We do not do this alone. We would like to thank all our funders, corporate partners, and the individuals who donate and those who raise money by taking on challenges. We are so grateful for the support you give us, thank you. Together, we are Gene People. The Gene People office will close on 20 Dec and reopens on 2 Jan. It will be a New Year, and we are looking forward to another year of making a difference to the lives of those in our community.

Gene People sends a small number of cards and each year selects one of the organisations in our Partnership Network to highlight. This year is the Nystagmus Network which we are proud to support.

Azreen Iqbal’s life has been a rollercoaster of medical challenges since her initial diagnosis of warm autoimmune hemolytic anemia (wAIHA) in 2016. As a young pharmacy student, she faced a sudden health crisis that led to a complex treatment journey, and ultimately a splenectomy due to her wAIHA diagnosis. When her condition relapsed six years after onset, this was further complicated by a second diagnosis of lupus. Now navigating the unpredictability of her autoimmune conditions, Azreen has had to make difficult decisions about her career and family planning, all while managing the physical and emotional toll of her illnesses. Read her story here.

A reminder that the Gene People office will be closed from the end of the day on 20 Dec and the team will return on 2 Jan 2025. Voicemails can still be left on the freephone numbers, but they will not be responded to until after the return to the office. This is to make sure that everyone gets a complete rest after a very busy year.