CAMBRIDGE, Mass.--(BUSINESS WIRE)--Genzyme, a Sanofi company (EURONEXT: SAN and NYSE: SNY), today announced the recipients of the Genzyme Patient Advocacy Leadership (PAL) Awards. This global grant program supports outreach programs by 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.
In its second year, the Genzyme PAL Award program encourages new and innovative approaches to improve disease awareness, patient care support, and education. More than 50 patient organizations representing 27 countries submitted proposals. Nine recipients were chosen and received over $100,000 from Genzyme, to support programs in Chile, France, Hong Kong, Macedonia, Poland, Thailand, the United Kingdom and the United States. Proposals were received from the Gaucher, MPS, Fabry, Pompe, and Niemann-Pick disease communities as well as several other rare disease patient organizations. 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.
“Raising awareness and supporting rare disease communities with such small patient numbers can be incredibly challenging, and requires creativity and commitment to move programs forward. This year the PAL Awards recognize many organizations around the world that are planning exciting efforts to raise awareness using the internet, family education, collaboration with healthcare providers, and in one case even using an igloo to draw public attention,” said Genzyme’s Head of Rare Diseases, Rogerio Vivaldi, M.D. “With over half of this year’s applications coming from organizations that had not applied previously for a Genzyme PAL award, we recognize that many worthwhile organizations need support to help them fulfill their missions. The PAL program can help to empower these patient groups in their important work.” Earlier this year, Genzyme also launched a blog devoted to patient advocacy activities called www.genzymerarecommunity.com. This blog is intended to connect various patient organizations together, building bridges across different disease communities to exchange ideas and to connect communities together.
An external review committee was assembled to review and select PAL Award recipients. The 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; Dr. Adriana Linares Ballesteros, Pediatric Hematologist/Oncologist and Gaucher disease expert; and Cara Hesse, Associate Director of Global Patient Advocacy at Genzyme. More information on the Genzyme PAL Awards can be found at: www.genzymeadvocacyawards.com.
Genzyme is pleased to announce the 2012 PAL Award grant recipients below:
Chile: Fundación de Pacientes Lisosomales de Chile (FELCH)
“Power
to the Patients: LSD Patient Education Campaign”
FELCH will conduct
an education campaign designed to improve disease knowledge and
management by the patient and medical communities. A key component of
the program involves physician-led workshops to reduce discrimination of
patients with LSDs and increase the level of commitment by the medical
community to improve overall care. In addition, government
representatives will lead a workshop for patients and physicians to help
increase knowledge around patient’s rights, the role of patient
organizations and patient advocacy.
France: Association Pour la Maladie de Fabry (APMF)
“Fabry
Families: No Patients Forgotten”
APMF will improve the diagnosis of
Fabry disease and optimize family screening programs through a
multi-media patient education and training program. APMF will work with
patients to create and distribute educational materials about the
inheritance pattern of the disease and ways of managing the
psychological burden of having to inform family members who may be at
risk. The campaign will also include workshops led by psychologists and
patient testimonial videos to help patients and their families cope with
the diagnosis of this genetic disease. At the end of the 18-month
period, APMF will conduct a follow up survey to assess the impact of the
campaign in hopes to increase family screening for Fabry disease.
Poland: A joint project of The National Forum for the
Treatment of Rare Diseases and the Polish Association for Families
Affected by Fabry
“Where is Fabry?” Campaign
This
PAL-funded project seeks to improve public awareness and understanding
of Fabry disease through a unique campaign called, “Where is Fabry?” for
Warsaw city residents. Using Facebook and other tools such as large
banners posted throughout Warsaw, they will encourage residents to
“find” Fabry in their city. Clues will lead residents to an igloo in the
city center, which will serve to highlight one particular symptom of the
disease – difficulty in withstanding heat. A press conference will be
held near the igloo once Fabry is “found.” The search for Fabry will be
followed by a video and media campaign.
United Kingdom: Niemann-Pick Disease Group UK (NPDG-UK)
“Teenagers
and Young Adults with Niemann-Pick Disease: Facing the Future Together”
This
project seeks to empower and improve the lives of teenagers and young
adults with Niemann-Pick disease through education, information, and
community. The NPDG-UK will host its first-ever meeting solely for
teenagers and young adults, so they can meet and interact with peers and
share personal stories of living with the disease. The NPDG-UK will
create a dedicated on-line forum to encourage on-going peer-to-peer
communication and establish an international exchange program to enable
one teenage representative to travel to the next meeting of the
International Niemann-Pick Disease Alliance.
United Kingdom: UK Gauchers Association
“Empowering
Young Type III GD Patients to Shape the Future”
To pilot a two-year
education program to educate and empower adolescent girls with Gaucher
Type III to become advocates and future leaders of the Gaucher
community. The project will include education and training on topics
such as research, the role of patient organizations, public speaking,
and advocacy. Participants will gain the skills necessary to become
ambassadors of the Gaucher community, ultimately serving as UK Gauchers
Association board members.
Hong Kong: Hong Kong MPS & Rare Genetic Diseases Mutual Group
(HKMPS)
“Knowing MPS with Comics”
The HKMPS group will
sponsor an art competition for university and high school students who
will create comic books based on the real lives of MPS patients in the
region. Original art work will be based on individual stories found in
previously published works by HKMPS. As a popular medium among Hong Kong
readers, the use of comics will increase awareness of the disease among
new populations who have little or no exposure to rare disorders like
MPS. The winners of the competition will have their works published in
booklets, which will then be available for sale.
Macedonia: The Macedonia Life with Challenges
“Don’t
Cry, Fight for Your Rights”
Because no information exists in the
Macedonian language about rare diseases, or Gaucher disease in
particular, The Life with Challenges group will sponsor a public
education campaign. Their campaign will include the translation of
educational materials from other countries into Macedonian and the
development of a magazine/newsletter to be distributed to patients,
physicians and the media. The campaign will also include a press
conference and other media outreach activities to increase support for
the rights of people with rare diseases among policy makers.
Thailand: The Genetic LSD Foundation
“Establishment
of LSD’s Patients Network in Thailand”
The Genetic LSD Foundation
seeks to strengthen the LSD community in Thailand through an outreach
program focused on rural, underserved areas of the country. They will
create four regional networks to help facilitate communication and
education between patients, their physicians, and the Foundation. The
Foundation will conduct their first-ever meeting in each region to
introduce patients and physicians to the Foundation, to educate them
about patient’s rights and to support continued communication and
networking among all participants.
United States: The Little Miss Hannah Foundation
“World Rare
Disease Day 2013”
The Little Miss Hannah Foundation seeks to
educate and raise awareness among school children about rare diseases.
Working in collaboration with the Global Genes project (R.A.R.E.) to
recognize Rare Disease Day 2013, the Foundation will teach elementary
school children in three Nevada schools about LSDs. The project also
seeks to raise awareness among adults by providing students with
take-home materials, as well as to promote compassion by enabling each
child to write a postcard to the family of a child living with a
lysosomal storage disorder.
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).