About Us

To read more about us and what inspired us to start this Foundation, click on the "more about me" button.

Aletta Longari

Chairman / Graphic Design

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Carol-Lynn Croker

  Web Administration International Liaison Officer  Patient Council

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Karen van Zijl

Promotions & Fundraising

The fundamental aims of the Foundation’s (known as The South African Porphyria Foundation) policy is to provide the following supportive functions:

  • Educate and raise awareness for both patients, family and friends.

  • Raise awareness within our respective communities / nationally / including the general public about Porphyria.

  • Liaise with Doctors and the Medical Fraternity about educating Nurses / other medical staff on Porphyria and dealing with Pophyric patients. This could be in the form of personal talks / webinars / attending various medical conferences / seminars / motivational talks etc.

  • Keeping patients updated on new research / webinars or any matters of interest.

  • Advising patients on suitable clothing for the cutaneous Porphyria's and suitable sunscreen.

  • Provide emotional support for families and patients – work toward process of setting up procedures so that once a patient is diagnosed they are put in contact with supportive structures from the get go, such as contacts such as Dietitians and Councillors to help families and patients work through the diagnosis and help those who remain un-diagnosed.

  • Educate medical field on the importance of treating patients with respect and not simply being dismissive and facilitate  communication between these entities.

  • Emphasis on early treatment/diagnosis/management of the condition.

  • Be proactive within the community by promoting SAPF at say sporting events, having a SA Porphyria Day, arranging events and fundraising. 

  • Provide a social media support system, information and a virtual support medium for members / patients and or their families where they have a safe place to talk about their condition, developing a buddy system to look out for one another.  

  • Provide information on complimentary therapy sessions which patients could attend  such as CBT / Health / Life Coaching / etc.

  • Provide contacts for patients of doctors or specialists that we know have a good bedside manner and ethos to help them thus avoiding trauma of dealing with medical staff who do not understand the disease and how it affects patients.

  • Set up a fund for those who cant afford treatment so the foundation could help towards costs.  

  • Sell SAPF merchandise to raise awareness.

  • Co-ordinate fundraising efforts for the Foundation.

  • Patient / doctor advocacy.

  •  Liaison with International associations so that we may keep abreast of new happenings in future drug trials etc. and provide support to international members who have VP, including South African’s living abroad.

  • Work with International organisations, but remain fully independent as a Foundation founded by patients and dedicated to patients.