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Pseudomyxoma Survivor

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Volunteering Oportunities

Nonprofit Overview

Mission: Pseudomyxoma Survivor is a patient and carer giver led charity for those affected by pseudomyxoma peritonei, appendix cancer and peritoneal surface malignancies. We provide support through our support group, buddy programme, grant scheme and through the information provided on our website. We also raise awareness of pseudomyxoma peritonei, which affects around 2 or 3 people per million each year, and support research.

Target demographics: those affected by the rare cancer, pseudomyxoma peritonei, and other appendix cancers

Direct beneficiaries per year: patients and their families with financial grants and prepared materials to raise awareness

Geographic areas served: many areas

Programs: our online support group, our buddy system for 1:1 support and by raising awareness of pseudomyxoma peritonei within the medical community, other nonprofit organisations and the wider public.

Community Stories

32 Stories from Volunteers, Donors & Supporters

3

Client Served

Rating: 5

My cancer diagnosis only happened because My daughter was born via emergency c section. She literally saved my life!However, this also means my annual scan is around her birthday. I applied for the grant to take my daughter to Peppa Pig world for her birthday so as to try and make sure we celebrate her and how special she is to us.Thanks to the pump survivor grant this was able to happen. Something that we certainly couldn't justify financially otherwise. I have attached a few photos of my daughter, husband and myself enjoying our amazing break away!

Comments ( 1 )

Pseudomyxoma Survivor We're so privileged to be able to help!

General Member of the Public

Rating: 5

A small charity providing key information that you just don’t get with more Generic cancer charities .... a real asset helping many families in difficult times. Keep up the great work everyone!

1 Catherine B.3

General Member of the Public

Rating: 5

A wonderful organisation offering support & invaluable information on such a rare form of cancer, of which little is known about to date.
They connect, help & give guidance to so many & they're all frankly just amazing!

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Pseudomyxoma Survivor 09/18/2019

Thank you for your kind comments, Catherine.

1

General Member of the Public

Rating: 5

Amazing organisation that has helped so many people. Invaluable information on the website. Well done to everyone involved.

1 Ruth H.2

General Member of the Public

Rating: 5

Brilliant supportive chatity for survivors and family of those affected by this cancer. I found the website very informative and helpful.
Brilliant work by the volunteers and staff

Comments ( 1 )

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Pseudomyxoma Survivor 09/18/2019

Thank you for your appreciation, Ruth.

2

Client Served

Rating: 5

Pseudomyxoma Peritonei is a rare illness, so most GPs know very little about it . That's how they helped my family most when my husband was diagnosed with it six years . They gave us masses of information and advice, directed us towards the best places for diagnosis and treatment within the UK. My husband very sadly died four years ago, but he had made so many contacts in Pseudomyxoma Survivor who helped him to understand what was happening. I wish them all the best in their work with cancer victims and survivors.

Comments ( 1 )

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Pseudomyxoma Survivor 09/18/2019

Thank you, Kathryn. We were all saddened by the loss of your husband. He is sorely missed.

2

Client Served

Rating: 5

Excellent charity that I recommend to patients
Very supportive with great help and advise

2

Client Served

Rating: 5

Being a cancer patient with any type of cancer is scary. For me, having Pseudomyxoma Peritonei (aka PMP) and not being able to find a cancer charity that could help me on my journey because most charities don't include PMP in their list of cancers they help, was even scarier. I am very thankful that Pseudomyxoma Survivor charity exists because they helped me when I needed help. Without their help I wouldn't have been able to get the treatment I needed for my cancer. They are the one charity that would help me and it's because of their help that I was able to get the cancer treatment I needed to beat this cancer. I am single with limited income and I had to travel over 800 miles one way, alone, to get to a cancer specialist who knew how to treat my cancer. I had to undergo a radical and very dangerous 18 hour cancer operation, and then stay for months by that hospital to recover from my surgery. Then I had to return and make that 800 mile trip every six months to see my cancer doctors for checkups. The grant they gave me was a lifesaver. The Pseudomyxoma Survivor organization is a wonderful group of people. They helped me by providing me with a grant I needed to travel to get my cancer treatment and follow-up tests and have the money I needed to eat while i was there. Without their help I wouldn't have been able to receive the life saving medical care I so desperately needed for this horrible disease. Pseudomyxoma Survivor does a fantastic job of supporting patients and caretakers. The advice on their website has been invaluable to me, especially when I needed to find a Pseudomyxoma Peritonei Specialist who could handle the extensive cancer I had, as well as provide valuable information about this rare cancer that I had never heard of before. Because of Pseudomyxoma Survivor's help I am cancer free. Pseudomyxoma Survivor is a first class operation who goes above and beyond to help cancer patients and raise awareness of this cancer.

Comments ( 1 )

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Pseudomyxoma Survivor 09/18/2019

Thank you, ReneeBW, we're very pleased to have been able to help!

2

General Member of the Public

Rating: 5

Amazing organisation. Very supportive of patients and family. Lots of very useful information on the website.

Comments ( 1 )

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Pseudomyxoma Survivor 09/18/2019

Thank you, elms. We hope the website helped you.

2

General Member of the Public

Rating: 5

Excellent organisation. Very supportive of patients and family. Lots of valuable information to share ..

Comments ( 1 )

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Pseudomyxoma Survivor 09/18/2019

Thank you, jennypenny.

2 Alyssa G.1

Client Served

Rating: 5

Psuedomyxoma Survivor has changed so many lives! My late husband was diagnosed with a form of PMP in late 2011 and it was heartbreaking. But having this community behind us made the fight that much easier. I support them to this day and even donate to thier cause because I know that every single family they care for is greatly and positively impacted by their care! I

Comments ( 1 )

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Pseudomyxoma Survivor 09/18/2019

Thank you Allyssa, we are very pleased to have your continued support.

2 Carriane B.

General Member of the Public

Rating: 5

This charity is amazing. It has provided so many people the understanding of this rare cancer that even many medics are not aware of. It supports those affected and their families in a multitude of ways from information, buddying and financial support to name just a few aspects. Anything needed by anyone associated with this rare cancer can be found through this charity.

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Pseudomyxoma Survivor 09/18/2019

Thanks, Carriane!

1 Honor K.

General Member of the Public

Rating: 5

An amazing charity supporting both individuals fighting against Pseudomyxoma and the families of those people.

It’s a charity ran by people who have first hand knowledge and experience of this cancer; who strive to make a difference to anyone on a similar journey.

2 Elizabeth C.5

General Member of the Public

Rating: 5

This charity provides essential help and advice to those afflicted by this rare, rare cancer. A small organisation, it makes a big impact for those diagnosed with this type of cancer.

Comments ( 1 )

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Pseudomyxoma Survivor 09/18/2019

Thank you, Elizabeth, your support is much appreciated.

2 Kirsty S.2

General Member of the Public

Rating: 5

A brilliant charity working hard to support cancer sufferers.

Comments ( 1 )

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Pseudomyxoma Survivor 09/18/2019

Thank you, Kirtsy

3 Colin M.

General Member of the Public

Rating: 5

This charity has helped bring together people from around the world who suffer an incredibly rare form of cancer and has given them the help, support and comfort of feeling like they are not going through this alone.

My sister Susan who battled this cancer for years and with the help of this charity overcome some of her struggles and is now supporting others with a similar journey

2

General Member of the Public

Rating: 5

A great charity who has supported my daughter and made a difference to her life. Thank you.

Comments ( 1 )

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Pseudomyxoma Survivor 09/18/2019

That you, rachy, we're very glad to have been able to help your daughter.

3

General Member of the Public

Rating: 5

When i was diagnosed with Pseudoyxoma Peritonei (PMP) i entered a world which i had no prior knowledge of and one which i very much struggled to understand. As a relatively rare disease (Around 1 to 10 people in a million) i found it very difficult to get any informtaion or help with what i was having to deal with. That is until i discovered Pseudomyxoma Survivor, they were massively supportive and i greatly benefited from a grant they had awarded me to provide some financial help. I am self employed and run my own small business and the fact that i had to take around a 1 year break while i was ill was very difficult and the grant i was given was very welcome at that time. I cant thank this organisation enough. They do an amazing job.

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Pseudomyxoma Survivor 09/03/2019

A diagnosis such as PMP can have a dramatic effect on people, especially if you're self-employed. We're grateful that we we able to award a grant to help tide you over.

2 Suzanne E.1

Client Served

Rating: 5

Diagnosed with PMP in 2016, fortunately I'm NED at the moment (long may it continue)
The support from this charity is amazing, and knowing your not on your own is priceless!!!!
Thank you ❤️

Comments ( 1 )

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Pseudomyxoma Survivor 08/17/2019

Thank you for your lovely words, Suzanne. We hope that your NED status continues as well!

2 Susan S.10

General Member of the Public

Rating: 5

Without Pseudomyxoma Survivor I could not cope with this disease . It is like having a best friend who is always there for you .

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Pseudomyxoma Survivor 10/30/2018

Thank you, Susan, glad we could help