Uk Mastocytosis Support Group Information Page

19/06/2026

While a diagnosis answers one question, it often raises many more.
For people living with a rare disease and the caregivers who support them, the moment a diagnosis is received can bring relief, validation, and clarity. But it can also mark the beginning of a new set of challenges.

What questions should you ask? How do you prepare for consultations? What resources can help you better understand your condition and navigate your care journey?

These are some of the questions explored in the second session in the PEOF+RARE Virtual Series - From Unknown to Known: Empowering Patients in the Care Journey.

A panel moderated by Emilie Luciani will feature insights from patient advocate Jessica Fraser, specialist clinician David Gonzalez de Olano, and industry representative Claudia Rockel, PhD.

Using Systemic Mastocytosis as a lens for broader learning, this interactive session will explore:

🔹 The realities of life after a rare disease diagnosis through shared lived experiences
🔹 Practical tools, resources, and strategies that can help you understand your condition, prepare for appointments, and take an active role in care decisions
🔹 How patients, caregivers, clinicians, and healthcare partners can work together to define what meaningful post-diagnostic support should look like

Join PEOF+ Rare on 25 June at 1:30 PM CET to learn, share experiences, and explore how people living with rare diseases can be better supported after diagnosis.

Register here: https://patientengagement.synapseconnect.org/events/peof-rare-from-unknown-to-known-empowering-patients-in-the-care-journey

01/06/2026

A reminder about our next Community Corner on Saturday! Places are limited!

Join the UK Masto Community Corner online for a discussion on Paediatric Mastocytosis

25/05/2026

Today we’d like to share the story of Forrest, who has walked over 65 miles for us this May so far!

Forrest was born with Mastocytosis and this progressed throughout their childhood years and into adulthood, being diagnosed with Indolent Systematic Mastocytosis at 19 years old.

Forrest is now studying for their master's in land management and conservation, and has completed fundraising for us before!

We are so grateful for all you’ve done for us Forrest!

Want to donate? See our link here-

This May, we are inviting you all to take part in Miles for Mast Cells! We are challenging people to walk, jog, run, pedal or even swim as many miles as they are physically able to so we can fundraise to continue to raise awareness!

22/05/2026

We’re so excited to be putting on our next Community Corner, but specifically for Paediatric Mastocytosis!

If you’re a carer, parent or guardian, we’d love to have you!

Please note that children under the age of 18 cannot attend the event alone.

Sign up here-

Join the UK Masto Community Corner online for a discussion on Paediatric Mastocytosis

20/05/2026

A reminder of our fundraiser! We still have some fantastic stories to share with you all too so keep an eye on our socials!

Today is the 1st May which means that our Miles for Mast Cells campaign is underway!!

We would love to have you join us to make as many miles for mast cell diseases as we can and also to help us raise funds so that we can continue in the work that we do.

Link to our Just Giving page- https://www.justgiving.com/campaign/milesformastcells2026

Make sure you join our Strava to track your miles and also to see how others are getting along- https://strava.app.link/XeTnDW36J2b

Thinking of doing a big amount of miles? Get in touch and we can talk about how we can help and share your journey.

Have a story about how UK Masto has helped you? Drop us a message and we can feature you in one of our posts!

11/05/2026

We would like to shine a spotlight on Lauren, who has recently completed a Park Run!

Lauren said “I used to do a fair bit of running pre diagnosis. I would end up covered in an itchy rash, and had several episodes of feeling really short of breath, dizzy, like panic attacks. Of course I didn't know at this point I had mastocytosis. I then found out that exercise can be a trigger, and thought that was the end of my running! I didn't particularly love running so it wasn't the end of the world. However recently I have started to miss the head space running would give me, so thought I'd carefully try again now medicated and with my epi pens on me just incase. Today I did my first Park Run as it felt a safe space to do so and it felt ok!”

We are in awe of your resilience Lauren! Thank you again for us.

Would you like to donate to show your support of Lauren? You can do this here- https://www.justgiving.com/campaign/milesformastcells2026

This May, we are inviting you all to take part in Miles for Mast Cells! We are challenging people to walk, jog, run, pedal or even swim as many miles as they are physically able to so we can fundraise to continue to raise awareness!

07/05/2026

We want to say a huge thank you to Hannah and Mouse for completing their incredible fundraiser for us! They ran 5 miles with Carry on in the Colliery and raised a brilliant sum of money for us.

Thank you both again- it looks like Mouse enjoyed his well earned cupcake!

Wanted to donate but didn’t get chance? This can be added to our Miles for Mast Cells Just Giving page- https://www.justgiving.com/campaign/milesformastcells2026

01/05/2026

Today is the 1st May which means that our Miles for Mast Cells campaign is underway!!

We would love to have you join us to make as many miles for mast cell diseases as we can and also to help us raise funds so that we can continue in the work that we do.

Link to our Just Giving page- https://www.justgiving.com/campaign/milesformastcells2026

Make sure you join our Strava to track your miles and also to see how others are getting along- https://strava.app.link/XeTnDW36J2b

Thinking of doing a big amount of miles? Get in touch and we can talk about how we can help and share your journey.

Have a story about how UK Masto has helped you? Drop us a message and we can feature you in one of our posts!

30/04/2026

Tomorrow is the 1st May which means that our Miles for Mast Cells campaign is making a return!!

We would love to have you join us to make as many miles for mast cell diseases as we can and also to help us raise funds so that we can continue in the work that we do.

Watch out for a link to our Just Giving page, where you’ll be able to donate or create your own fundraising page to track exactly how much money you’ve raised.

Thinking of doing a big amount of miles? Get in touch and we can talk about how we can help and share your journey.

Have a story about how UK Masto has helped you? Drop us a message and we can feature you in one of our posts!

For now, make sure you join our Strava to track your miles and also to see how others are getting along- https://strava.app.link/XeTnDW36J2b

24/04/2026

Don’t forget to sign up to our next Community Corner! Places are limited and almost sold out!

We’re so excited to be putting on our next Community Corner, with a specific theme!

If you have MCAS or HaTS and would like to talk about tips and tricks, along with how to talk about your disease then we’d love for you to join us on Sunday 26th April at 4pm.

Tickets can be found at- https://www.eventbrite.co.uk/e/uk-masto-community-corner-tickets-1987940561734?aff=oddtdtcreator