Five advocacy groups for familial amyloid polyneuropathy (FAP) are sharing a total $270,000 award given by Alnylam Pharmaceuticals to support projects looking to promote patient care, and greater disease awareness and understanding.
“We are pleased to demonstrate our commitment to supporting patient communities through the Advocacy for Impact grants program for the second year in a row,” Tiffany Patrick, Alnylam’s head of global patient advocacy and engagement, said in a press release.
Groups recognized this year for new projects centered on FAP, also known as hereditary transthyretin amyloidosis (hATTR), are the Balearic Association for Andrade Disease (Asociación Balear de la Enfermedad de Andrade) in Spain, Amyloidosis Alliance in France, Amyloidosis New Zealand Trust, the French Association in the Fight Against Amyloidosis, and the UK ATTR Amyloidosis Patients’ Association.
The Balearic Association for Andrade Disease intends to develop a digital learning program to raise awareness and offer education on FAP management.
Amyloidosis Alliance plans to develop a toolbox that will include digital platforms, videos and webinars to support patient groups, and help establish an international network of FAP organizations. The French Association in the Fight Against Amyloidosis wants to work alongside medical professionals to create tools to optimize FAP management and care.
Amyloidosis New Zealand Trust will host a conference with healthcare professionals and patients, so that medical professionals can learn of FAP’s multidisciplinary nature directly from people who know it well. A goal is to help create a national amyloidosis center in that country.
UK ATTR association plans to organize educational sessions for patients and their families in up to five cities outside of London, promoting both information and social growth within local communities.
APF is developing a format to teach healthcare professional about this rare disease and spotlight the patient experience, while OHF plans to partner with hospitals to create multidisciplinary to improve care of people with all forms of hyperoxaluria.
“Those impacted by rare diseases often face unique challenges due to the complexity of their conditions. Through Advocacy for Impact, we hope to inspire innovative thinking that brings high-impact initiatives to diverse communities and geographies, and ultimately, improves the lives of rare disease patients,” Patrick said.
Applications to the program were evaluated by a committee that included company officials as well as people with expertise in nonprofits and rare diseases.
Grants, up to $50,000 for each of seven groups chosen, were awarded based on unmet needs, an effective plan of action, the anticipated impact within a rare disease community, and a clear strategy to determine success.
A new round of grants for the 2020–21 program year is planned, the company announced in its release.
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