The Rare Anaemias International Network is a global community-based ecosystem made up of both patient advocacy groups and individuals supporting rare anaemias and aims to improve knowledge sharing and advocating for the equal access of patients to innovative therapies and drugs. Patients will be participating both through their disease-specific associations but also as individuals, as many anaemias are rare (affecting fewer than 1 in 2,000 people), or ultra-rare (affecting fewer than 1 in 50,000 people).
The RAIN’s vision is to empower and strengthen patient advocacy groups supporting rare anaemias by establishing a global network for the dissemination and exchange of knowledge and best practice.
The RAIN is launching with two founding members: Thalassaemia International Federation (TIF) and Sickle Cell Disease Association of America (SCDAA) and will be guided by a Steering Committee of patient advocates and representatives from the global rare anaemias community. They will meet regularly to discuss the performance and projects of the RAIN and devise action plans on how to best support the community to address any unmet needs.
Scientific Education Support supports several successful patient advocacy initiatives with the mission of supporting patients, caregivers and communities in areas of unmet need and lack of resource, which include the MDS Alliance, The Global Cholangiocarcinoma Alliance, and KNOW AML.
For more information on the Rare Anaemias International Network, please contact firstname.lastname@example.org
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Press release distributed by Pressat on behalf of Scientific Education Support, on Monday 22 March, 2021. For more information subscribe and follow https://pressat.co.uk/