2014 PAL Awards Program Expands Reach with Inclusion of Thyroid
Cancer Community
Company Website:
http://www.genzyme.com
CAMBRIDGE, Mass. -- (Business Wire)
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.
About Sanofi
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).
Contacts:
Genzyme
Ingrid Mitchell, 617-768-6699
Ingrid.Mitchell@genzyme.com
Source: Genzyme
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