Recipients

2014 PAL Awards Grant Recipients

Fabry Support and Information Group

Fabry Support and Information Group

United States | www.fabry.org

“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 Herzegovina. 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 International Pompe Association

The Netherlands | www.worldpompe.org

“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 Cure & Action for Tay-Sachs (CATS) Foundation

The United Kingdom | www.cats-foundation.org

“The eAcademy for Tay-Sachs & Sandhoff”

An app for a 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, but 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 in to the program. Counselors will be available to them as a resource for any questions, including those addressing healthcare access, preventative care, and more.

Mucopolysaccharide & Related Diseases Society of Australia

Mucopolysaccharide & Related Diseases Society of Australia

Australia | www.mpssociety.org.au

“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 are 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 FoundationNational Niemann-Pick Disease Foundation

National Niemann-Pick Disease Foundation

Canada and the United States | www.nnpdf.org

“Bridging the GAP to the Future”

A two day training session for board members that 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.

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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