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 and will be awarded twice a year. 

The Application Form should be completed and submitted in English, however if this creates difficulty please contact the SSIEM.

The rounds 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.



1st Round closed May 2020 - 12 Applications

Estonian Association of Phenylketonuria and Galactosemia - Estonian
Title of Meeting or activity: Annual meeting and workshop for our members and their families - Funded €2,000.00

Society for Patients and Friends of Patients with Inherited Metabolic Disease, Krikos Zois - Greece
Title of Meeting or activity: Inherited Metabolic Diseases:Individually Rare but United in Arms - Funded €2,000.00

Pakistan Inherited Metabolic Disorders Network of Pakistan Society of Chemical Pathology - Pakistan
Title of Meeting or activity: Pak-IMD Net: Patient Support Group Meeting: Living Better with IMD’s in Pakistan - Funded €3,000.00

Zellweger UK - United Kingdom
Title of Meeting or activity: Zellweger UK Family Conference Weekend - Funded €3,000.00



1st Round closed March 2019 - 22 Applications 

AISMME Italian Association Inherited Metabolic Disease Support - Italy
Title of Meeting or activity: Hereditary Metabolic Diseases in Verona: state of the art and prespectives for the future in Verona Italy - Funded €1,000.00

CDG UK - United Kingdom
Title of Meeting or activity: CDG UK family day: meet the experts - United Kingdom - Funded €2,500.00

Korea Congenital Metabolic Disorder Association (KCMDA) - Korea
Title of Meeting or activity: KCMDA Annual Family Camp - Korea - Funded €2,000.00

Mito Foundation - Australia
Title of Meeting or activity: Brisbane Mitochondrial Disease Information Day - Brisbane, Australia - Funded €2,500.00



1st Round closed March 2018 - 5 Applications

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 - 3 Applications

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



1st Round closed April 2017 - 3 Applications

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) - United Kingdom
Title of meeting or activity: North West Support Group Meeting - Funded €500.00

2nd Round closed October 2017 - 1 Application

Scandinavian Association for Glycogen Storage Disease - Sweden
Title of meeting or activity: 4th Biannual Conference April 2018 in Sweden- Funded €2,000.00


Eligibility Policy

Application form

2019 - Mito Foundation Information Day Report 


Membership of the Society is open to all interested in and willing to support the aims of the Society.

 Membership 2020      User Profile


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Society for the Study of Inborn
Errors of Metabolism (SSIEM)
Registered Office:
130-132 Tooley Street
London SE1 2TU

Registered Charity No.1010639 
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