About Us
------------ Our story------------
Pempghigus Africa Trust is a patient support group founded in 2021 by Noel Mudibo, who, having experienced the traumas of Pemphigus Vulgaris himself, wanted to offer support to other pempghigus and pemphigoid patients or caregivers.
The Pemphigus Africa Trust, board of Directors are mostly formed from a team of volunteers who themselves are either pemphigus or pemphigoid, works hard to set the strategy and ensure that Pemphigus and Pemphigoid fulfils its aims.
Every year, we build an ambitious plan and progress the ways we support patients and their loved ones, as well as spreading the word about autoimmune blistering diseases to the people who need to know about them.
Since 2021, we have, amongst many other things:
- Run small fund for patient treatment
- Set up a Facebook page and group.
- Participated in conferences and media interviews
- Participated in several studies run by clinicians and non-profits like Global Skin (GRID)
------------ What we do------------
Our main aim is to provide support and advice to people diagnosed with pemphigus or pemphigoid. None of us are experts, but, as fellow patients or carers, we have a lot of experience and empathy to share.
Most people coming to us find there is someone here who has, or is going through, a similar experience to them or their loved one.
We also aim to expand awareness of these diseases in order to speed up diagnosis and improve treatment options.
We try to keep up-to-date on any research or medical information related to the diseases, but we do this on an ad hoc basis and only have limited access to medical experts on a very informal basis at the moment.
We also work with the medical community as patient representatives in several studies and programmes.
We welcome enquiries and requests and are also delighted to hear from anyone willing to provide support and share their experiences.
We would also like to hear from you about the things that have proved effective in the management of your disease, including products or methods you have discovered for minimising pain and the impact of the blistering.
Most of the information on the website is derived from other resources. Many of these are listed on the useful websites page. We are particularly grateful to the International Pemphigus and Pemphigoid Foundation, with whom we are allied, as well as collaborating with other groups.
We strongly advise investigating more sources of information about pemphigus and pemphigoid via all the links we provide and elsewhere. On this site, we can only offer summary information and advice and we may not be 100% up to date on current thinking or treatments.
We are always keen to involve volunteers from any walk of life, with any skills or interests, to join us in our work. These may vary from an ad hoc project or a regular commitment, however big or small. The list is endless, but the suggestions below are a few areas where you might contribute. Please do contact us on pemphiguafrica@gmail.com
You can join us and help bring value and standardization to our work.
Help with our communiations
You can join us and help run our communication on our social media channels and contribute to our website
We are struggling to get funding. Our major donation comes from Global Skin, therefore you can support us by donating to us.
Other sources of monies are from small grants, which are targeted at a specific project, or from funeral donations.
We love to hear from people about how we can improve or what you like or don't like about our work.
Ask your Dentist/GP practice/hospital/clinic/care home, etc if you can out up a poster or leave a few leaflets.
We do run a 1,000 USD fund for our patient treatment for the patients who cannot afford paying consultation fee, doctors fee and buying over the counter medicine.
This is a group of volunteers mostly patients who runs Pemphigus African Trust. Their Chairman is Noel Mudibo
They meet at least twice a month via zoom to make decisions and plan a strategy. Board members have day-to-day responsibilities for budgeting, maintaining our Facebook and other social media, being the interface with other organisations we work with, developing and maintaining our to name just a few.
Pemphigus Afrca Trust is indebted to the many individuals and organisations who have contributed to our group's growth and success.
We, particularly, want to thank Globalskin and IPPF ,more particularly IPPF executive director Patrick Dunn for his enormous efforts in creating this website. Without his efforts would have been unable to create this comprehensive and impressive library of information.
Our thanks, too, to everyone who has contributed, not all of whom are mentioned below but to whom we are extremely grateful.