Recipients

2011 PAL Awards Grant Recipients

Fabry Support and Information Group of the Netherlands

Netherlands | www.fabry.nl

“International Fabry Female Day”

This PAL project seeks to launch and promote an annual, international Fabry Female Day to raise awareness about the effects of the disease in women. The project will also seek to increase knowledge of disease progression in women through the development and analysis of an international survey of Fabry women.

Colombian Patient Association of Lysosomal Disorders (ACOPEL)

Columbia

“Productive Keepers Program”

This PAL project seeks to provide job training and resources to "Keepers" (also known as caregivers) who have had to leave their jobs and forfeit necessary household income in order to care for a loved one suffering from a lysosomal storage disorder. The program will enable participants to continue their caregiver responsibilities while developing new job skills.

Italian Niemann Pick Foundation

Italian Niemann Pick Foundation

Italy | www.niemannpick.org

“Diagnostic Ombudsmen Program”

This PAL project will develop a training course for physicians, enabling them to improve their ability to support families dealing with and navigating complex diagnoses associated with rare diseases. The course is intended for physicians working in the public health system who have experience working with local authorities and in social services.

National Association of Gaucher Patients

Bulgaria

“Patient Representative Training Program”

This PAL project will involve the development and implementation of a 3-day training program for patient representatives designed to educate participants about Bulgaria’s healthcare system, media relations, awareness campaigns, the legislative environment, and patient rights vis-à-vis the pending integration of Bulgarian and European health care systems.

Association of Family Members & MPS Carriers of Sao Paolo State

Brazil

“MPS Disease Awareness Campaign”

This PAL project will support a campaign to raise awareness of MPS within Brazilian society through media outlets, utilizing celebrity support and new printed materials that describe the effects of MPS.

National Tay-Sachs and Allied Diseases Association

National Tay-Sachs and Allied Diseases Association

United States | www.ntsad.org

“Philosophy of Care Video”

This PAL project will focus on the production and distribution of a unique video resource and guide to help newly diagnosed families understand the spectrum of care options, situate their own goals for their child and develop their philosophy of care.

National Gaucher Foundation of Canada

National Gaucher Foundation of Canada

Canada | www.gauchercanada.ca

“My Normal” Digital Storytelling Project for Kids

This PAL project will transform a speech given by a Gaucher patient about her experiences growing up with Gaucher disease, beginning from an initial diagnosis as a young child where there were no treatment options available, up to the availability of treatment and a future of new possibilities ahead. The digital format will combine recorded voice, simple text, photos and original artwork that is intended to inspire children with Gaucher and other rare diseases.

International Society For Mannosidosis and Related Diseases

International Society For Mannosidosis and Related Diseases (ISMRD)

United States | www.ismrd.org

“Management Guidelines”

This PAL project seeks to develop and publish a first-ever medical paper that sets forth disease management guidelines for complex symptoms of Mucolipidosis II and Mucolipidosis III.

Marbleroad

United States

“Rare Children’s Storybook Contest”

This PAL project will support an online contest within the rare disease community for age-appropriate stories reflecting the perspective of self, sibling, caregiver, or other relevant role in the illness experience, and to help facilitate dialogue and understanding for families facing complex illness.

Rare Disorders Society of Singapore

Rare Disorders Society of Singapore

Singapore

“Children’s Piano Charity Concert”

This PAL project will support a piano concert at a women’s and children’s hospital that will serve as the launch for RDSS and the first fundraising event for the organization. PAL funds will also support the creation of an internet portal to increases awareness of LSDs within Singapore.

Lysosomal Storage Disorders Support Society

Lysosomal Storage Disorders Support Society (LSDSS)

India | www.lsdss.org

“Continuing Medical Education Program”

This PAL project will provide medical professionals in 4 locations in India with proper information regarding LSDs with the aim of increasing more accurate diagnoses.

Expression of Hope

expressionofhope

A Global Program of Awareness and Inspiration Featuring Works of Art by the Lysosomal Storage Disorder Community

Learn more

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