From BBC News: A boy with severe epilepsy has become the first patient in the world to trial a new device fitted in their skull to control seizures. Read the full story at buff.ly/3W6seeG

A great testimonial is from a 30 year old woman who found out that she was a carrier of sickle cell. We sign-posted her to their local Haemoglobinopathy Nurse Counsellor and the Sickle Cell Society. For queries regarding genetic conditions call 0800 987 8987

Gene People is an anti-racist organisation. We oppose all forms of discrimination, including racism & Islamophobia. We support everyone affected by a genetic condition & their support universe. Our statement about being an anti-racist organisation is available on our website.

Did you know that Give as you Live Online is the free and easy way to raise money for Gene People when you shop online with 6,000+ stores. Simply sign up for an account and start shopping! Your support really will make all of the difference to us! buff.ly/3rbjHsi

Did you know that research into genetic conditions not only benefits affected individuals but also contributes to our understanding of human biology, paving the way for advancements in medicine and healthcare for all? buff.ly/3kJus1H #geneticcondition

One of our Partners Action for XP is recruiting new trustees. This is a great opportunity to really make a difference. Deadline: 19 Aug 2024 buff.ly/3WO65C2

If you’re near Brighton on the 1st September, then please support Ring 20 in raising awareness of r(20) syndrome/rare epilepsy at their stand at Brighton Racecourse during their annual Family Fun Day. buff.ly/46CHWCX

One in 20 people have a rare disease that could present at any point in their lives and can be caused by genes, environmental exposures, or their combined effects. Wondering how AI is helping in the diagnosis of rare diseases? Have a read! buff.ly/3A7DErg

Here's an interesting article on how the UK compares to other countries in terms of access to medicines for those living with a rare disease buff.ly/3WvOz5C #raredisease

Did you know that Give as you Live Online is the free and easy way to raise money for Gene People when you shop online with 6,000+ stores. Simply sign up for an account and start shopping! Your support really will make all of the difference to us! buff.ly/3rbjHsi

Many of our helpline callers tell us that health professionals have never heard of their genetic condition and do not know how to respond to their concerns. Our helpline covers all #GeneticConditions and we are here to support professionals too. buff.ly/3wycfbh

Want to be featured on an upcoming episode of the "Once Upon a Gene podcast" with Effie Parks.? Send in your voice notes reflecting on your rare disease journey buff.ly/3T6O94u

Hands up if you have a birthday in September! Why not make your birthday extra special this year by hosting a fundraiser for Gene People! By supporting us, you can change the lives of others experiencing or supporting those with genetic conditions. buff.ly/3Z8X4qd

Have you heard of Visual Snow Syndrome or Static Vision? Read Irena Nazarian's account of being diagnosed with this rare condition here buff.ly/3ACmXEC

As your child grows up, depending on their needs, they might need equipment to help them learn, move, eat or bathe. Find out more here buff.ly/3AIXKs0

🧠 It’s #BrainAneurysmAwareness Month and we’re highlighting the work of HBA Support and their mission to bring hope to people impacted by hereditary brain aneurysms. Learn more buff.ly/3APHOnN #BrainAneurysmAwarenessMonth #HBASHopeOnTheHorizon #BAAM2024 #HBASupport

The ABPI has published a report, showing how industry clinical trials drive economic growth, support jobs, and deliver wider health system benefits. Clinical trials are vital to finding treatments for rare and genetic conditions. Read the report buff.ly/4e0QAyg

Looking for a challenge – to test yourself, to get in shape, or bond with friends on a weekend adventure? If so, why not take on an Ultra Challenge in aid of Gene People! Walk, Jog or Run at YOUR pace on the Ultra Challenge Series event of your choice. buff.ly/4dJjcvC

Do you pay for your medication for a long-term condition in England? Write to your MP today, and urge them to take action on prescription charges. buff.ly/3SQLR9w