The second round of applications for 2024 is now closed. 

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.

Eligibility Policy

Application form

 

2024

1st Round closed March 2024 - 16 Applications

Georgian Parents’ Association for PKU - Georgia
Title of Meeting or Activity: First national PKU conferrnce- living better with PKU in Georgia - Funded €2,500.00

Hrvatski savez za rijetke bolesti / Rare Diseases Croatia - Croatia
Title of Meeting or Activity: 1st Croatian Rare Disease Day 2024 – Metabolic Patient Information Meetin - Funded €2,300.00

Les Enfants du Jardin - France
Title of Meeting or Activity: Family Support Weekend - Prailles-la-Couarde France - Funded €2,300.00

Maple Syrup Urine Disease (MSUD) Family Support Group - USA
Title of Meeting or Activity: 20th Symposium - Reston, VA, USA - Funded €900.00
Report

The British Porphyria Association - UK
Title of Meeting or Activity: BPA Residential Activity Weekend - Thetford, Norfolk, UK - Funded €2,000.00

 

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
Report

Cure Mito Foundation - USA
Title of Meeting or Activity: Empower & Inspire 2nd Annual Leigh Syndrome Symposium - Virtual - Funded €3,000.00
Report

Les Feux Follets - France
Title of Meeting or Activity: Feux Follets’ Annual Congress 2023 - Lille, France - Funded €3,000.00
Report

Svenska MPS-föreningen - Sweden
Title of Meeting or Activity: Family Conference 2023 - Seglora, Sweden - Funded €2,500.00
Report 

2^nd Round Closed September 2023 – 14 Applications

 

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
Report

NSPKU - United Kingdom
Title of Meeting or Activity: National Conference - UK - Funded €3,500.00
Report
 

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

2^nd 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

2^nd 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: 5^th 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 

2^nd 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