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February 25, 2020
People with rare diseases often face unique challenges due to the complexity of their conditions, and we recognize that unique challenges call for creative solutions. We developed Advocacy for ImpactTM Grants with that in mind, and because, at our core, we value and understand how exploring and developing new ideas has the potential to create high-impact initiatives that are a catalyst for change. You can learn more about the program here.
On Rare Disease Day 2019, we announced the first recipients of Advocacy for Impact grants - seven patient advocacy groups in six countries across three continents received grants totaling nearly US $250,000 to fund new initiatives supporting two rare diseases - hATTR amyloidosis and acute hepatic porphyria (AHP).
Said Tiffany Patrick, Alnylam's Head of Global Patient Advocacy & Engagement at the time the 2018-2019 grants were awarded: "The level of response from the rare disease advocacy groups to this new program underscores the pressing challenges these patient communities face. The proposals selected presented unique and thoughtful projects that look to reach diverse populations."
In the time since receiving their grants, the following organizations have been hard at work putting the funds to good use to support patients.
Amyloidosis Research Consortium (ARC), USA
The Amyloidosis Research Consortium has launched an online tool to help facilitate more effective communication between patients and their doctors. The Amyloidosis Appointment Companion allows patients to easily organize their thoughts, concerns, and questions prior to each doctor’s visit so that care teams can better understand their specific needs. The tool is already being used by numerous leading treatment centers throughout the US. Learn more about ARC here.
Brazilian Porphyria Association (Associação Brasileira de Porfiria, ABRAPRO), Brazil
The Brazilian Porphyria Association is in the process of implementing a genetic screening program to more easily identify disease-causing mutations in patients. The organization has already completed testing for five individuals and three more are currently in progress. Relatives of these individuals will then be tested after the results come in to provide families with greater access to diagnosis and aiding in prevention. Learn more about ABRAPRO here.
FAMY Norrbotten, Sweden
FAMY Norrbotten has visited two health centers in Sweden to provide educational information to patients and healthcare providers about amyloidosis. Through their visits, the organization is increasing awareness of the disease throughout the country to help doctors to make quicker and more accurate diagnoses. They have invited a total of 15 health centers, including hospitals in Stockholm and Gothenburg, to participate thus far and will continue to schedule more visits to reach more patients and healthcare providers. Learn more about FAMY Norrbotten here.
Swiss Society of Porphyria (Schweizerische Gesellschaft für Porphyrie, SGP), Switzerland
Swiss Society of Porphyria has expanded the use of its Häm O`Globin and Family cartoon character to better explain porphyria among both patients and the wider medical community. A poster of the character has been used at a variety of healthcare conferences and meetings with international audiences of patient advocates and disease experts. Several patient organizations from Great Britain and the Netherlands have adapted the character for their own use as well. Häm O`Globin’s reach is continuing to expand in 2020 with more language translations and an upcoming feature to be published in a German medical journal with reach of over 40,000 physicians. Learn more about SGP here.
The Brazilian Association of Amyloidosis (Associação Brasileira de Paramiloidose, ABPAR), Brazil
Over the past year, The Brazilian Association of Amyloidosis has held regional meetings across six cities in Brazil to increase awareness of ATTR amyloidosis among patients and healthcare providers. The meetings attracted a total of 120 participants and included a variety of activities to help the organization and healthcare providers to better understand the ATTR care landscape and patients’ greatest unmet needs, particularly those related to treatment access. The successful meetings led to a 20% increase in the number of patients in the association’s registry and sparked the formation of a national network of diverse health professionals who are equipped to help ATTR patients in every corner of the country. Learn more about ABPAR here.
The British Porphyria Association (BPA), United Kingdom
In October 2019, the British Porphyria Association hosted an educational festival to support and engage families affected by porphyria, with a focus on the younger population that is often overlooked. The event attracted 169 attendees, of which almost 30% were younger than 30. The festival’s interactive activities were focused on the increasing awareness of the wellbeing and mental health needs of porphyria patients, holistic pain management strategies, and providing resources to help patients and their families navigate life with the disease. Participants thoroughly enjoyed this unique approach to patient education, with 97.5% rating the day an 8 out of 10. Learn more about the BPA here.
The Canadian Association for Porphyria (Association Canadienne de Porphyrie, ACP), Canada
The Canadian Association for Porphyria focuses on delivering evidence-based information and advocating for comprehensive care that supports patients with porphyria, their families and health care providers. Check back soon for additional updates on CAP's activities. Learn more about the CAP here.
The application period for the 2019-2020 Advocacy for Impact Grants has closed, and recipients will be informed by mid-2020. We look forward to sharing the results of their efforts in the future.
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