Recipients

2012 PAL Awards Grant Recipients

Fundación de Pacientes Lisosomales de Chile (FELCH)

Chile

“Power to the Patients: LSD Patient Education Campaign”

This PAL project comprises an education campaign designed to improve disease knowledge and management by the patient and medical communities. A key component of the program involves workshops led by physicians and government officials on topics such as discrimination, patient’s rights, quality of care, the role of patient organizations and patient advocacy.

Association Pour la Maladie de Fabry (APMF)

France | www.apmf-fabry.org

“Fabry Families: No Patients Forgotten”

This PAL project will support an initiative to improve the diagnosis of Fabry disease and family screening programs through a multi-media patient education and training program. APMF will also create educational materials about the inheritance pattern of Fabry and the difficult emotions that come with informing family members who may be at risk. The project will include workshops led by psychologists and patient testimonial videos to help patients and their families cope with the diagnosis of this genetic disease.

The National Forum for the Treatment of Rare Diseases and the Polish Association for Families Affected by Fabry

The National Forum for the Treatment of Rare Diseases and the Polish Association for Families Affected by Fabry

Poland | www.dzienchorobrzadkich.pl

“Where is Fabry?” Campaign

This PAL funded project seeks to improve public awareness and understanding of Fabry disease through a unique campaign 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."

Niemann-Pick Diesease Group UK

Niemann-Pick Diesease Group UK (NPDG-UK)

United Kingdom | www.niemannpick.org.uk

“Teenagers and Young Adults with Niemann-Pick Disease: Facing the Future Together”

This PAL funded project seeks to empower and improve the lives of teenagers and young adults with Niemann Pick disease through education, information, and community. Beginning with the first ever meeting of teenagers and young adults affected by Niemann-Pick, PAL funds will support a dedicated on-line forum to encourage on-going peer-to-peer communication. An international exchange program will enable one youth representative to attend the next meeting of the International Niemann Pick Disease Alliance.

UK Gauchers Association

UK Gauchers Association

United Kingdom | www.gaucher.org.uk

“Empowering Young Type III GD Patients to Shape the Future”

This PAL project will support a pilot two-year education program to educate and empower adolescent girls with Gaucher Type III to become advocates and future leaders of the Gaucher community. It 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 MPS & Rare Genetic Diseases Mutual Group (HKMPS)

Hong Kong MPS & Rare Genetic Diseases Mutual Group (HKMPS)

Hong Kong

“Knowing HKMPS with Comics”

This PAL funded project will help support 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. 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.

The Macedonia Life with Challenges

Macedonia

“Don’t Cry, Fight for Your Rights”

This PAL project will support a public education campaign in the Macedonia language, to make information about rare diseases accessible to local Macedonian physicians, government officials, and the media. Prior to their PAL Award, no information about rare diseases existed in the local language. The campaign will include translations of educational materials and the development of a magazine/newsletter. 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.

The Genetic LSD Foundation

The Genetic LSD Foundation

Thailand

“Establishment of LSD’s Patients Network in Thailand”

This PAL project seeks to strengthen the LSD community in Thailand through an outreach program focused on rural, underserved areas of the country. They will create 4 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.

The Little Miss Hannah Foundation

The Little Miss Hannah Foundation

United States | www.littlemisshannah.com

“World Rare Disease Day 2013”

This PAL project 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.

Expression of Hope

expressionofhope

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

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