From Chief Regional Patient Advocate Fiona Wardman There have been a few focused tasks and projects in the Asia Pacific region over the most recent months, including the rolling out the new member only access courses in Advocacy Academy. During this period, I have attended virtual conferences and symposiums for the region, including the [...]
This input is dated May 2021 In brief Name for organization: HAE South Africa 98 members at 1 Jan 2021 Name of approved HAE treatments: None registered Fun/interesting facts South Africa is a unique country with very resourceful citizens who have accomplished notable things internationally in many fields. South [...]
From HAE South Africa: We are planning a handover from Adrienne de Jongh to Janice Snyman and have restructured our committee to include Jane Rushton, who is in the legal field. Janice is in a new position as COO and will be handling day to day matters. We are still awaiting for our nonprofit [...]
I organized the first HAE doctors’ training in Ghana with the collaboration of the Rare Disease Ghana initiative. It was overwhelmingly attended by 40 doctors and clinicians alike. It was a good interactive session with Dr. Priya Bowry giving a lengthy and comprehensive presentation on the clinical approach to angioedema and HAE with good [...]
In Ghana, we have been able to start discussions on HAE with the Immunology Society of Ghana (ISG). We have also been able to liaise with Rare Disease Ghana for purposes of raising awareness amongst the general public. We have established new doctor contacts in Tanzania. We are in the process of holding further [...]
From Adrienne de Jongh, President of HAE South Africa Growing up with HAE comes with many challenges, some of which are not easy to talk about. We wanted to open up the conversation during these crucial years to allow youngsters to feel comfortable and united through it all. Additionally, the teen years are essential [...]
From Regional Patient Advocate Patricia Karani The COVID-19 situation in Sub-Saharan Africa is still the main focus of this region. However, I am taking advantage of any small step I can to move things forward where possible in countries like Zimbabwe, Kenya, Sudan, Nigeria, and Ghana. HAE International was able to raise awareness in [...]
From Regional Patient Advocate Patricia Karani HAE International was able to make collaborations with the Sudanese Society of Clinical Immunology and Allergy (SSCI&A) to conduct the first doctor training seminar on HAE amongst health care professionals in Sudan. The online seminar was hosted by Dr. Rayan Goda, a clinical immunology and allergy specialist, and [...]
From President Adrienne de Jongh, HAE South Africa: This year we have used the lockdown time to consolidate our admin and legal positions. We have formally established a non-profit company and thereafter concentrated on finalizing the legal infrastructure to be able to accept donations. We have regular Zoom meetings and are adding an additional [...]
From President Adrienne de Jongh, HAE South Africa HAE South Africa have successfully been registered as a non-profit company which will allow us to progress and collect some much-needed funds. We have four directors at present and plan to add a fifth soon so that we can fulfill all the roles we have set out to [...]
HAE International is a global non-profit network of member organizations dedicated to raising awareness of hereditary angioedema and improving the lives of people with HAE.
HAE International (HAEi)
10560 Main Street, Ste PS40
Fairfax City, VA 22030
United States of America
gro.ieah@ofni
HAE International (HAEi)
Vejlevej 16, 1.
8700 Horsens
Denmark
gro.ieah@ofni
