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
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
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
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