The second round of applications for 2021 will open on 1st July.
The new initiative started 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.
2020
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 - Tallinn, Estonian - Funded €2,000.00
Report
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, Thessaloniki, Greece - 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 Sind province, Pakistan - Funded €3,000.00
Zellweger UK - United Kingdom
Title of Meeting or activity: Zellweger UK Family Conference Weekend 2021 - Okehampton, Devon, UK - Funded €3,000.00
2nd Round Closed September 2020 – 13 Applications
Association Tunisinne des Maladies Lysosomales (ATML) – Tunisia
Title of Meeting or activity: Facing Lysosomal Storage Diseases Together – Tunisia - Funded €1,500.00
Adult Polyglucosan Body Disease Research Foundation (APBD RF) – USA
Title of Meeting or activity: 2020 APBD Patient, Family, and Caregiver Support Series (Webinar) - Funded €4,500.00
Portuguese Association for Congenital Disorders of Glycosylation (APCDG) – Portugal
Title of Meeting or activity: 5th World Conference on Congenital Disorders of Glycosylation 2021 - Portugal - Funded €4,000.00
2019
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
Report
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
Report
2nd Round closed September 2019 – 16 Applications
Australian Leukodystrophy Support Group Inc – Australia
Title of Meeting or activity: Leukodystrophy Australia WA City, Rural, Remote Information & Inclusion – Perth Australia - Funded €2,700.00. Suspended due to COVID19
LHON Eye Society – Sweden
Title of Meeting or activity: Mito-run – Regenerating mitochondria and activating legally blind patients and spreading the word – Solna, Sweden – Funded €2,000.00
Report
Metabolic Support UK – United Kingdom
Title of Meeting or activity: Metabolic Support UK Annual Conference – Improving Patient Access – Birmingham, UK – Funded €2,000.00
The Freya Foundation – United Kingdom
Title of Meeting or activity: 2019 family meet up – Alton Towers, Staffordshire, UK – Funded €2,500.00
Report
Organic Acidemia Association – USA
Title of Meeting or activity: OAA Family Conference 2020 – Austin, Texas, USA – Funded €2,800.00
2018
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
2017
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
