International Pemphigus & Pemphigoid Foundation
The International Pemphigus & Pemphigoid Foundation seeks to develop a more global footprint for its activities in advocacy and patient support. The Member Impact Fund has allowed this organization to appoint a new patient leader and develop him as their first Regional Director to establish a support group in Kenya. This new entity will leverage the basis for expansion and development to other countries in Africa.
To kick off this Member Impact Fund project, the new leader of the Kenyan entity, Noel Mudiba attended the IPPF 2020 conference, after which bi-weekly coaching calls were established between the leader and IPPF staff. From there, they were able to collaboratively work with Noel to develop the new name for this entity and obtain web domain registrations for Kenyan and surrounding regions.
As part of the governance component, the NGO registration, tax compliance documentation, Articles of Incorporation, and other documents were submitted to the Kenyan authorities to ensure proper registration as an NGO Cooperation: Meetings were held with leaders of Rare Disease Kenya to discuss areas of possible cooperation including facilities and equipment.
Medical Outreach: Agreements are now in place with specialty clinics, pharmacies, ophthalmologists, and hospitals for referral for diagnosis and treatment of P & P patients.
Patient Outreach: Additional patients contacted, and both provided with peer support and referrals as well as requests made of them for them to be an active part of the new organization.
Fundraising: Proposals have been developed for appeals to patients, the medical community and funders outside of Kenya for future activities.Additional event and product-based ideas for development have been built. For example, the leader of the organization is about to self-publish a book of children's stories from Africa with the help of the IPPF in order to raise funds.
Equipment: The effort was being run from the Kenyan leader’s mobile phone, using an unreliable connection. So the IPPF assisted in the evaluation of computer needs and then used part of the funding to both purchase a used computer locally, as well as to pay the initial charges for an internet connection.
