RARE Disease MENA region
RARE Disease MENA region
We are proud to continue our collaboration with CSL Behring and bring you our third special edition in the series. This issue looks at the efforts being made to strengthen the patient voice in the MENA region through the work of the جمعية الإمارات للأمراض النادرة UAE Rare Disease Society; the potential in calculated globulin screening as a tool for early diagnosis of antibody deficiency; and the work of HAE International – HAEi in addressing the needs of those with hereditary angioedema.
CSL Behring edition 3 – Special edition 010
Main edition https://bit.ly/CSL-HAE
We are proud to continue our collaboration with CSL Behring and bring you our third special edition in the series. This issue looks at the efforts being made to strengthen the patient voice in the MENA region through the work of the UAERDS; the potential in calculated globulin screening as a tool for early diagnosis of antibody deficiency; and the work of HAE International in addressing the needs of those with hereditary angioedema. https://bit.ly/CSL-HAE
We would also like to thank all the contributors who so generously gave their time and insight to this project to raise the profile of rare disease and to CSL Behring for their continued partnership.
A holistic approach to addressing the needs of the rare disease patient
Marwan Abdulaziz Janahi has been involved with the Dubai Science Park for over 15 years, becoming managing director in 2018. In 2021 Marwan was elected as chairman of the board for the UAE Rare Disease Society (UAERDS). He shares his vision for the Society in uniting rare disease stakeholders to continue to drive progress in the region and effect real change for those living with a rare condition
The potential in using calculated globulin screening for early detection of antibody deficiency
Calculated globulin is often performed as part of routine liver function testing but it can also be used to provide an incredible wealth and depth of information about a person’s immune system. Prof Stephen Jolles talks about the work being carried out in Wales on calculated globulin screening and the huge potential for this simple and inexpensive method of testing
https://bit.ly/CSL-CalculatedGlobulinScreening
Working to overcome the obstacles to diagnosis and treatment of hereditary angioedema in the MENA region
As with many rare diseases, access to medical expertise, timely diagnosis and viable treatments for people with hereditary angioedema can be challenging, and the situation is intensified for those patients living in North Africa and the Middle East. It is the mission of the umbrella organisation, HAE International (HAEi), to garner its collective might to raise awareness of this rare condition and significantly improve the lives of those living with the disease. Maria Ferron and Michal Rutkowski from the group discuss the unmet needs of the HAE community and the comprehensive resources and initiatives provided by their organisation
