Patient Group Support

FINANCIAL SUPPORT

PATIENT GROUP SUPPORT
The new initiative start by the SSIEM in April 2017 for Patient organisations and support groups who represent more than 50 families with a rare IEM are invited to apply for modest financial support for their events or parent/carer projects. These are one-off donation and not a grant.
 
Funds will be awarded twice a year, the first closing date was 20th April 2017 and the awardees were
 
2017
1st Round closed April 2017
Soft Bones Canada
Title of meeting or activity: Project – Live Hearty with HPP - Funded €500.00
 
Multiple Sulfatase Deficiency Action Foundation - Ireland
Title of meeting or activity: MSD expert conference - Funded €2,000.00
 
NSPKU (UK)
Title of meeting or activity: North West Support Group Meeting - Funded €500.00
 
2nd Round closed October 2017
Scandinavian Association for Glycogen Storage Disease - Sweden
Title of meeting or activity: 4th Biannual Conference April 2018 in Sweden- Funded €2,000.00
 
2018
1st Round closed March 2018
ALD Life - United Kingdom
Title of meeting or activity: ALD Life Community Weekend 2018 in United Kingdom - Funded €2,000.00
 
Fett-SOS – Germany
Title of meeting or activity: Family meeting in Autumn, information flyer for metabolic ambulances in Germany - Funded €2,000.00
 
The Asociación Mexicana de Fenilcetonuria A.C. - Mexico
Title of meeting or activity: Workshop for families with phenylketonuria: living better with PKU in Mexico - Funded €1,000.00
 
2nd Round closed September 2018
SWISS PKU – Switzerland
Title of meeting or activity: Children’s camp of Children affected by Phenylketonuria in Einsiedeln, Switzerland – Funded €3,000.00
 
HCU Network Australia – Australia
Title of meeting or activity: 3rd Homocystinurias Patient - Expert Meeting 2019 in Rome, Italy – Funded €2,000.00
 
The rounds thereafter will open 1st January with a closing date of 1st March and the second round of the year will open 1st July with a closing date of 1st September.

Associated Documents

Eligibility Policy

Application Form