Over the past five years, Sanofi Genzyme has awarded more than $450,000 in Patient Advocacy Leadership (PAL) Award grants to nearly 40 patient organizations around the world. The PAL Awards is our global grant program supporting non-profit patient organizations that work on behalf of individuals living with lysosomal storage disorders (LSDs).
This program is meant to empower non-profits to develop bold new ideas to improve disease awareness, patient education, and care and support for the LSD community. As these organizations work directly with patients, they have a unique understanding of the ever-growing and evolving needs of the LSD communities. By giving patient organizations the support to implement innovative projects that address the critical needs of this group, we continue to strengthen our shared pursuit of optimizing patient care.
These creative, collaborative projects have been overwhelmingly successful and have positively impacted the lives of LSD patients, their families and caregivers. Here are just a few examples of programs funded through the PAL awards.
Expanding the reach of LSD support networks in Thailand
In 2012, a grant was awarded to the Genetic LSD Foundation of Thailand to strengthen the LSD community through an outreach program focused on rural, underserved areas of the country. With the grant, the Foundation was able to create several regional networks to facilitate communication and education between patients, their physicians and the Foundation. This allowed the Foundation to establish a relationship with underserved LSD patients and their communities. The Genetic LSD Foundation was also able to develop a patient database to help continually distribute the vital information patients need to maintain optimal care.
“My Normal:” inspiring young patients with rare diseases
Individuals diagnosed with an LSD suffer from more than just physical burdens; the conditions they live with often have other psychological, emotional and social effects that impact their daily lives. While it can be a lot to handle for an adult, it can be especially difficult for children. rel="noopener noreferrer" Recognizing this, the National Gaucher Foundation of Canada used funding from a PAL Awards grant to develop “My Normal,” a platform for patients to showcase their stories using various media, and change the perception of what a “normal” life may be for children living with a rare disease. As part of the project, the NGF of Canada partnered with a Gaucher patient to produce a representation of her journey with Gaucher. Her story combined her recorded voice, text, photos, and original artwork to empower children with LSDs and other rare diseases to reduce stigma and spread hope about living with rare disorders. The video was produced in both English and French, and to date has been viewed more than 2,500 times.
"Where is Fabry:” raising awareness of Fabry in Poland
Educating the general public about LSDs and the effects they have on the patients, their families and caregivers, has notoriously been a difficult task. However, building awareness of the reality of what it means to live with a LSD is critical in reducing isolation and increasing acceptance for the LSD community. With support from a PAL Awards grant, the National Forum for the Treatment of Rare Diseases and the Polish Association for Families Affected by Fabry launched the “Where is Fabry” campaign. Through the use of social media and endorsements from local Polish celebrities, the groups set up a large event in a public square in Warsaw where they used provocative props, like a giant blow up ball, to get the attention of the general public and share information about Fabry disease. This program broke down the barrier that often separates LSD patients and the general public, and created the foundation for a more integrated society for the LSD community.
The impact that the patient organizations have achieved through their innovative programs and ideas has reached across LSDs and the world. Due to their continued success, we’re thrilled to announce that applications for the 6th annual PAL Awards program are now being accepted. The deadline to apply is June 20, 2016. For more information and to apply, please visit the PAL website at www.palawards.com.