Genzyme Announces Winners of Patient Advocacy Leadership (PAL) Awards
Genzyme, a Sanofi company (EURONEXT: SAN and NYSE: SNY), today announced the recipients of the 2014 Genzyme Patient Advocacy Leadership (PAL) Awards. This global grant program supports innovative projects by non-profit organizations in disease awareness and education, community mobilization, non-profit development and good governance activities, patient care and support programs.
The Genzyme PAL Awards focuses on non-profit organizations that work on behalf of patients living with lysosomal storage disorders (LSDs), a group of rare, inherited disorders that cause progressive and debilitating health problems. This year, the Genzyme PAL Award program expanded its reach to include submissions from the Thyroid Cancer community.
“Now more than ever, patient organizations play a vital role in providing leadership, resources and access to care and support for patients and their families around the world,” said Jamie Ring, Genzyme’s Vice President of Global Patient Advocacy and Humanitarian Programs for Rare Diseases. “We are excited that the momentum of the PAL Awards has allowed us this year to recognize the many thyroid cancer organizations, who like the LSD community, work tirelessly to optimize patient care and meet the ever-growing needs of the patient community.”
More than 50 patient organizations representing more than 25 countries submitted proposals. In addition to the Thyroid Cancer community proposals, submissions were received from the Tay-Sachs, MPS, Krabbe, Fabry, Sandhoff, Pompe, and Niemann-Pick disease communities as well as several other rare disease patient organizations. Twelve recipients were chosen and collectively received over $125,000 from Genzyme, to support programs in Australia, Japan, Canada, Brazil, Peru, Croatia, Bulgaria, Poland, the Netherlands, the United Kingdom and the United States. The Genzyme PAL Award program supplements Genzyme’s existing grants program and does not replace the contributions made locally each year to support advocacy groups.
An external review committee was again assembled to review applications and select the PAL Award recipients. The LSD committee members included: Patricia Collins, former Chief Development Officer at Clinton Health Access Initiative; Jean F. Campbell, Rare Disease Advocacy Consultant; Erik Tambuyzer, President and Founder, ABConsult; Kimberly Goodrich, CFRE, The Multiple Sclerosis Association of America, Senior Director of Development; and Dan Leonard, Senior Manager of Patient Advocacy at Genzyme. The Thyroid Cancer committee members included: Pat Furlong, CEO, Parent Project Muscular Dystrophy; Mike Rodrigues, CEO, Triangle; Robin Colodzin, Artist; Erica Schenk, Secretary FSIGN; and Barbara Diana, Patient Group Relations, Genzyme.
More information on the Genzyme PAL Awards can be found at: www.genzymeadvocacyawards.com.
Genzyme is pleased to announce the 2014 PAL Award grant recipients below:
Fabry Support and Information Group – United States
LSDs Revealed – Understanding the Basis of Lysosomal Storage Diseases: A video project designed to teach the underlying mechanism of LSDs in an understandable, entertaining format. The video will be designed in such way as to allow it to be adapted by different patient organizations to educate across disease areas and diverse geographies around the world.
The Croatian Alliance for Rare Diseases – Croatia
Traveling LSD Photo Exhibit: A photo exhibition of people living with LSDs in cooperation with rare disease organizations from Croatia, Serbia, Macedonia, and Bosnia and Hercegovina. This project will be the first regional cooperation on a specific group of diagnoses. The hope is to build awareness of LSDs throughout the region through photos of patients in their everyday lives, and to address the disparities that exist in terms of access to care.
The International Pompe Association – The Netherlands
Pompe M Power – The IPA Leaders of the Future Project: A mentoring program to empower young adults that are interested in becoming involved with international patient advocacy for Pompe disease. The program will involve face to face meetings, the creation of training materials and tool kits for future use.
The Cure & Action for Tay-Sachs (CATS) Foundation – The United Kingdom
The eAcademy for Tay-Sachs & Sandhoff: An app for smartphones and tablets designed for caregivers of individuals with Tay-Sachs or Sandhoff disease. Ideas for useful topics will be developed in collaboration with the community, and will likely include such topics as seizure management, feeding options, and other critical issues.
The Japan Fabry Disease Patient and Family Association – Japan
YO * RI * SO * I Outreach Support Project: The creation of an outreach/support team within the organization made up of Fabry patients and/or family members of patients. Counselors will be assigned regions and be responsible for reaching out to often isolated Fabry patients in their region who opt into the program. Counselors will be available to them as a resource for any questions, including questions around healthcare access, preventative care, and more.
Mucopolysaccharide & Related Diseases Society of Australia – Australia
School Connection Project: Through research, resource development, customized training and consultancy, this project will engage families and their schools to ensure students’ sense of connection and belonging to their schools is increased. The project hopes to achieve a number of concrete goals, such as a decrease in the amount of bullying experienced, a better approach to managing schoolwork and expectations for students who are often absent, and a systematic approach to working with MPS students instead of an ad hoc approach.
Regional Association of Patients and Families with Fabry Disease – Brazil
Living and Learning with Fabry: A multi-pronged program to help Fabry patients around the country to have a unified voice in order to advocate for their community and influence the National Policy of Rare Diseases. This includes the creation of a scientific committee to support education, attendance at a patient advocacy conference, and the development of a newsletter for the community.
Peruvian Association of Patients with Lysosomal Storage Disorders – Peru
Spread Knowledge of Rare Diseases in Peru – A 2.0 Initiative: The project is in collaboration with the National Institute of Child Health (INSN) to create an app for tablets. The app will provide content from the recently completed “Atlas on Pediatric Dysmorphology.” Content for health professionals will be provided in an interactive and mobile manner, such as diagnostic assistance, case studies, patient and family testimonials, contacts at the INSN, and other features that will help to spread knowledge of rare diseases in Peru.
National Niemann-Pick Disease Foundation – Canada and the United States
Bridging the GAP to the Future: a two day training session for board members which will include topics such as best practices in governance, roles and responsibilities of effective boards, the board/staff partnership, and other critical topics. The ultimate goal of the training is to allow the board to be more effective at meeting the needs of family members and constituents as they move through clinical trials working towards appropriate treatments and therapies.
The Light of Life Foundation - the United States
There is no such thing as a good cancer advocacy campaign: To create testimonial video featuring patients’ and survivors’ stories to affirm that no cancer is a good cancer. Video will be featured on website and social media with patients and medical community.
APOZ and Friends Cancer Patients Organization – Bulgaria
Thyroid Cancer Awareness Campaign to Change Status-quo: To gather medical experts from different fields involved in the patient journey and empowering patients with relevant knowledge. This is done by organizing a discussion forum, raising awareness at hospitals, press, social media and patient testimonials.
Polish Amazons, the Social Movement (PASM) – Poland
Butterflies under protection: To develop a long term awareness campaign including guides, website, social media and patient testimonials in collaboration with doctors.
About Genzyme, a Sanofi Company
Genzyme has pioneered the development and delivery of transformative therapies for patients affected by rare and debilitating diseases for over 30 years. We accomplish our goals through world-class research and with the compassion and commitment of our employees. With a focus on rare diseases and multiple sclerosis, we are dedicated to making a positive impact on the lives of the patients and families we serve. That goal guides and inspires us every day. Genzyme’s portfolio of transformative therapies, which are marketed in countries around the world, represents groundbreaking and life-saving advances in medicine. As a Sanofi company, Genzyme benefits from the reach and resources of one of the world’s largest pharmaceutical companies, with a shared commitment to improving the lives of patients. Learn more at www.genzyme.com.
Sanofi, a global and diversified healthcare leader, discovers, develops and distributes therapeutic solutions focused on patients’ needs. Sanofi has core strengths in the field of healthcare with seven growth platforms: diabetes solutions, human vaccines, innovative drugs, consumer healthcare, emerging markets, animal health and the new Genzyme. Sanofi is listed in Paris (EURONEXT: SAN) and in New York (NYSE:SNY) .
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