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Dubai Science Park (DSP), the science-focused business communityand part of TECOM Group, marks Rare Disease Day 2018 on 28 February in acknowledgment of the importance of supporting medical advances in the healthcare sector. Last year, DSP set up a ‘working group’comprising a number of its business partners with an interest in developments in tackling rare diseases in the Middle East region.
Launched by EURORDIS and its Council of National Alliances in 2008, Rare Disease Day’s main objective is to raise awareness amongst the general public and key decision-makers about rare diseases and their impact on patients' lives, while encouraging researchers and decision makers to address the needs of those living with rare diseases.
Working closely with its business partners, including Sanofi and Alexion, and other relevant stakeholders, DSP set up the working group to help assessthe current rare disease landscapein the UAE and ways in which they can be more effectively tackled, including suggestions for collaboration and cooperation with relevant organisations to prepare a road map for success.
Marwan Abdulaziz Janahi, Executive Director of DSP and Chairing Member of the Pharmaceuticals and Medical Equipment taskforce of the Dubai Industrial Strategy 2030, said:“Part of our mandate at Dubai Science Park is to support companies operating within the science sector and this includes businesses in healthcare and pharmaceuticals who are supporting medical advancement in the UAE and further afield. Some of our partners are focused on being part of the effort in tackling rare diseases through the identification of improved diagnoses, medication and patient care. We are pleased to be part of that process and as such decided to facilitate dialogue in this space through launching our working group.”
Jean-Paul Scheuer, Country Chair & General Manager, Sanofi Gulf, said: “At Sanofi, we continue to focus on being transformative in rare diseases: developing therapies, supporting research and offering innovative solutions that have the potential to offer meaningful change to those impacted by rare diseases. Our commitment to providing patients with healthcare solutions goes beyond products, services and support that complement our therapies. It includes working with different stakeholders that help address the needs of people with rare diseases.
“Indeed, the collaborative efforts of the working group initiated by the Dubai Science Park and led by Marwan Abdulaziz Janahi are pivotal to highlighting and taking action on topics of critical importance to patients, including rare disease screening, diagnosis, and access to healthcare, among others,” he added.
Manar Al Nahar, Country Manager Middle East at Alexion, said:“Alexion is a global biopharmaceutical company focused on serving patients and families affected by rare diseases through innovation, development and commercialization of life-changing therapies. We warmly welcome the Ministry of Health’s recent decree allowing fast-track registration of innovative orphan drugs which will allow faster and broader access to new therapies for patients with high unmet clinical needs.
In February 2017, Dubai Science Park and Sanofi signed a Memorandum of Understanding (MOU) for the discovery and the delivery of transformative therapies for patients with rare and special diseases.
Dubai Science Park regularly hosts science-focused events for representatives from government, business and academia to facilitate discussion on a wide range of topics in the field of science, energy and the environment.
For more information on Rare Disease Day, please visit https://www.rarediseaseday.org
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