Spotlight On: GIST Cancer UK
What does GIST Cancer do?
GIST Cancer UK supports people affected by Gastro Intestinal Stromal Tumour (GIST), a rare cancer of soft connective tissues in the digestive tract. The charity also has a specialist branch for those with PAWS-GIST (Paediatric, Adolescent, Wild-type & Syndromic GIST), which predominantly affects children and younger people.
What is the experience like for patients with GIST cancer?
GIST is a devastating disease. A GIST diagnosis can be very scary for patients, as it is so rare that doctors do not know much about it and it is rarely diagnosed early. There is no cure for GIST where surgery is not possible, medication can be difficult to tolerate, and even then drug resistance and disease progression is common. Internal organs such as the stomach and bowel are often damaged and even removed.
What do they do?
- Provide support for patients through a help line, patient meetings, email forums and online communities
- Provide education and awareness of GIST through publications, social media and meetings
- Support research via The National GIST tissue bank, the PAWS-GIST clinic and by funding GIST research grants
- WOW! fact: all of the above is run entirely by dedicated volunteers
What is your top priority?
To stimulate research projects and clinical trials for better treatments and ultimately a cure for this devastating disease
How do I find out more about them?
