The first round of applications for 2024 will open on 1 January.
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.
2023
1st Round closed March 2023 - 16 Applications
Association for Glycogen Storage Disease-UK (AGSD-UK) - United Kingdom
Title of Meeting or Activity: The Main Event - Loughborough, UK - Funded €1,500.00
Cure Mito Foundation - USA
Title of Meeting or Activity: Empower & Inspire 2nd Annual Leigh Syndrome Symposium - Virtual - Funded €3,000.00
Les Feux Follets - France
Title of Meeting or Activity: Feux Follets’ Annual Congress 2023 - Lille, France - Funded €3,000.00
Svenska MPS-föreningen - Sweden
Title of Meeting or Activity: Family Conference 2023 - Seglora, Sweden - Funded €2,500.00
2022
1st Round closed March 2022 – 7 Applications
Colombian Association of Patients with Innate Errors of Metabolism ACPEIM - Colombia
Title of Meeting or Activity: EIM Symposium - EIM Basics, Laws and Nutrition Workshop - Bogotá, Colombia - Funded €3,000.00
Report
Association Francophone des Glycogénoses (AFG) - France
Title of Meeting or Activity: 30th Anniversary Family Weekend - Lyon, France - Funded €3,500.00
Report
Dutch Patient Association for Acute Porphyria (PVAP) - Netherlands
Title of Meeting or Activity: First Dutch National Patient Information Meeting - Zwolle, The Netherlands - Funded €3,500.00
Report
2nd Round closed September 2022 - 5 Applications
DIG PKU e.V. - Germany
Title of Meeting or Activity: Agegroup specific seminar package for newly diagnosed families and adults - Germany - Funded €3,500.00
Report
Galactosaemia Support Group - United Kingdom
Title of Meeting or Activity: Family Weekend Away 2022 - UK - Funded €2,500.00
NSPKU - United Kingdom
Title of Meeting or Activity: National Conference - UK - Funded €3,500.00
2021
1st Round closed May 2021 – 8 Applications
The AKU Society – United Kingdom
Title of Meeting or Activity: International Patient Workshop 2021 – Liverpool, UK – Funded €2,000.00
The Association for Creatine Deficiencies – USA
Title of Meeting or Activity: CCDS 2021 Virtual Conference - Carlsbad, USA - Funded €1,000.00
Report
The Belgische Organisatie voor Linderen en volwassenen met een Stofwisselingsziekte (BOKS vzw) – Belgium
Title of Meeting or Activity: Family Weekend - Ostend, Belgium - Funded €4,500.00
MitoAction – USA
Title of Meeting or Activity: International Metabolic Family Conference – USA - Funded €2,500.00
Report
2nd Round Closed September 2021 – 13 Applications
Mitocon - Insieme per lo studio e la cura delle malattie mitocondriali ODV - Italy
Title of Meeting or Activity: Mitochondrial Diseases Conference 2021 - Virtual - Funded €2,500.00
Report
SLO Deutschland e.V - Germany
Title of Meeting or Activity: 20th Annua Meeting - Funded €1,000.00
Report
The Lily Foundation - United Kingdom
Title of Meeting or Activity: Patient Information Days - Oxford, United Kingdom - Funded €2,000.00
The United MSD Foundation - USA
Title of Meeting or Activity: The 2022 Multiple Sulfatase Deficiency Scientific and Family Meeting - USA - Funded €2,500.00
Report
VKS, The Dutch Association For Patients With IEM - The Netherlands
Title of Meeting or Activity: Educational webinarsseriesof 3.Title: What every patient needs to know about genes and therapies, but is difficult to understand - Funded €2,000.00
2020
1st Round closed May 2020 - 12 Applications
Estonian Association of Phenylketonuria and Galactosemia - Estonia
Title of Meeting or activity: Annual meeting and workshop for our members and their families - Tallinn, Estonia - 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
Report
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
Report
Zellweger UK - United Kingdom
Title of Meeting or activity: Zellweger UK Family Conference Weekend 2021 (postponed to July 2023) - Okehampton, Devon, UK - Funded €3,000.00
Report
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
Report
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
Report
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
Report
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. Delayed due to COVID19
Report
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. Delayed due to COVID19
Report
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