Sanofi Genzyme Recognizes Rare Disease Advocacy Organizations Across the Globe: 2019 PAL Award Grant Recipients

Patient advocacy groups play an integral role in supporting those impacted by uncommon and underserved medical conditions. With a focus on access to resources and care, the work of non-profit organizations around the world is critical in helping address the unmet needs facing patients and their families. Since 2011, Sanofi Genzyme has supported the Patient Advocacy Leadership (PAL) Award Grant, which has helped these organizations fulfill their missions by funding unique projects for patients living with lysosomal storage disorders (LSDs), a group of rare diseases that can cause debilitating health problems.

This year, five recipients were chosen from a diverse group of 32 global candidates who submitted compelling proposals supporting the LSD patient community. After careful consideration, an independent external review committee selected the winning recipients from Romania, Australia/New Zealand, France, Italy and India.

“Each year, the recipients of the PAL Award Grant support different needs facing the lysosomal storage disorder patient community,” said Sebastien Martel, Global Head of Rare Diseases. “Their work is critical to raising awareness, optimizing care and meeting the ever-growing needs of those living with rare diseases across globe.”

Since the program’s inception, Sanofi Genzyme has awarded more than $900,000 to support 57 projects, including patient workshops, advocacy trainings, awareness campaigns and research, proposed by organizations across 28 countries.

We are proud to announce the 2019 PAL Award recipients:

Coalition of Patients Organizations with Chronic Disease (Romania)

COPAC brings together 19 rare disease associations in Romania to improve advocacy and thought leadership training. COPAC is using their PAL Grant to fund a leadership training for 10 patient representatives across three newly established LSD associations. The project will include a training program, a 6-month mentoring program, and a project contest, as well as ensure pro bono legal services to each organization, with the goal of supporting people with LSDs.

Gaucher Association of Australia & New Zealand (Australia/New Zealand)

Using a multifaceted approach, GAANZ aims to improve the health and well-being of local Gaucher patients through community building, education, advocacy, and research. The PAL Grant will fund a website designed to reach the patient and medical communities to educate more broadly about Gaucher disease and current research.

Vaincre les Maladie Lysosomale (France)

Vaincre les Maladies Lysosomales represents just over 1,000 active members affected by lysosomal diseases. Their PAL Grant Award will be used to fund the Lysosome Webinar Project and E-Conference. The project will develop and increase the frequency of information sessions and trainings offered by the association, as a complement to its "physical" meetings, for the LSD community in France – approximately 3,000 patients – and francophone countries. 

Associazione Italiana Niemann Pick Onlus (Italy)

AINP promotes knowledge of Niemann-Pick, with the hope of accelerating diagnosis, being able to compare knowledge, and support others caring for patients with the disease. The Niemann-Pick Italian Association will be using their PAL Award Grant to improve home care for patients with Niemann-Pick and related diseases in order to reduce the burden on families as a result of 24-hour-care, improve the quality of life for patients and their family members, create trust between families and healthcare providers and gather data to help structure a project to assist larger families. 

Indian Alliance of Patient Groups: Dakshayani and Amaravati Health and Education (India)

With 70 million people believed to be suffering from a rare disorder in India, IAPG, made up of 42 different patient groups, aims to draw attention to rare and chronic diseases and bring patient voices to the center of the conversation. IAPG will be using their PAL Award Grant to create a strong national voice for change through patient leaders and advocates. More specifically, they will set up patient support groups, patient exchange forums, implement social media awareness campaigns and create patient workshops.

The next PAL awards submission period is expected to open in early 2020.

SAGLB.XLSD.19.08.1163 - Approved August 2019