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June 2, 2020
As the COVID-19 pandemic continues to have a significant impact on people and communities all over the world, the rare disease community faces unique challenges and additional burdens due to the complexity of their conditions. During this unprecedented time, and for the second year in a row, we are pleased to show our support by announcing this year’s Advocacy for Impact™ recipients. The 2019-2020 Advocacy for Impact global competitive grants program was open to patient advocacy groups supporting the hereditary transthyretin-mediated (hATTR) amyloidosis, acute hepatic porphyria (AHP) and primary hyperoxaluria type 1 (PH1) rare disease communities.
The 2019-2020 Advocacy for Impact grant recipients come from five countries across three continents, and will receive grants totaling $270,000.00 to execute their initiatives, outlined below:
Balearic Association for Andrade Disease (Asociación Balear de la Enfermedad de Andrade [ABEA]), Spain – ABEA will develop a hATTR amyloidosis learning program using digital training capsules to raise awareness of the condition and provide education on disease management. Learn more about ABEA here.
American Porphyria Foundation (APF), USA – The APF will develop an engaging educational tool utilizing the grand rounds format, “Porphyria Grand Rounds,” to educate healthcare professionals about AHP and shine a spotlight on the patient experience. Learn more about the APF here.
Amyloidosis Alliance, France – The alliance will create a comprehensive toolbox, inclusive of digital platforms, videos, webinars, templates and documents, for use by new or developing patient groups to support their structural development, ultimately helping to establish a strong international network of hATTR amyloidosis organizations. Learn more about the Amyloidosis Alliance here.
Amyloidosis New Zealand Trust, New Zealand – The trust will organize and host a conference open to healthcare professionals and patients, so that the healthcare community can hear directly from patients to better understand the multidisciplinary nature of hATTR amyloidosis; findings will help to establish a National Amyloidosis Centre for New Zealand. Learn more about the Amyloidosis New Zealand Trust here.
French Association in the Fight Against Amyloidosis (Association Française contre l'Amylose), France – The association will work closely with healthcare professionals to develop a set of educational tools aimed at optimizing disease management and patient care. Learn more about the association here.
The Oxalosis & Hyperoxaluria Foundation (OHF), USA – The OHF will partner with hospitals to create Centers of Excellence that will increase access to optimal multidisciplinary clinical care and services for those impacted by all forms of hyperoxaluria, including PH1. Learn more about the OHF here.
UK ATTR Amyloidosis Patients' Association (UKATPA), UK – UKATPA will organize informational sessions for patients and their families in up to five different cities outside of London to provide disease education and create social opportunities for those in the community to meet one another and develop supportive local relationships. Learn more about UKATPA here.
For additional information about the Advocacy for Impact grants program, please click here.
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