Rare diseases are at an increased risk of suffering from a disconnect between scientific advancement, effects on patients and social perception. Rare disease researchers have seldom opportunities to witness their research contextualised in real-life. Patients often encounter an unprepared healthcare system and face the unbreachable wall of scientific jargon. And what might be the most detrimental, lack of awareness in the general public which can lead to social exclusion. 

PIPgenerating ART are honoured to collaborate with two excellent patient organisations: PTEN UKI and GoPI3Ks. They have accompanied us through our PIPgenerating ART journey, providing us with inspirational stories and eye-opening conversations. By creating a heterogeneous environment shared with artists, scientists and patients, we wish to have created an outlet for patients, families and friends to share their stories. It is through these discussion panels that we can raise awareness, focus our research and promote a seamless integration of patients in our society.

After all their support, we want to give back as much as we can. Help us raise awareness for our charities! All funds raised will be equally split between both charities. These funds will help fulfil the mission of both charities; providing a network of support for patients, families and carers of patients of PHTS and PROS (PTEN Hamartoma Tumour Syndrome and PIK3CA Related Overgrowth Spectrum respectively).

Both PHTS and PROS are umbrella terms for a series of rare genetic syndromes. Within each disease there is great diversity ranging from minor effects to disabilities which drastically impair the day-to-day life of patients. Bringing attention to these lesser spoken syndromes helps further research and improve the quality of life of patients.

We hope you can join us in this journey!

For more information on PHTS and PROS, please visit www.ptenuki.org (PTEN) and www.gopi3ks.com (PROS).

Thanks for taking the time to visit our JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.