A collaboration between six Dutch academic metabolic centers & patient organization VKS

A collaboration between six Dutch academic metabolic centers & patient organization VKS

Patients with an inherited metabolic disease deserve an early diagnosis as well as effective and optimal treatment. Detrimental effects of the disease can only be prevented or mitigated through individualized treatment and tailored care.

What are inherited metabolic diseases?

Inherited metabolic diseases are a group of more than a 1000 different conditions caused by a genetic defect in metabolism.

These diseases are characterized by the inability to convert proteins, fats and carbohydrates into energy which causes shortages of building blocks and a buildup of harmful or toxic products. This results in irreversible organ damage, affecting the brain and nervous system, but also the eyes, kidneys, heart and liver.

Patients suffer from lifelong physical and mental disabilities. The symptoms may differ per inherited metabolic disease and are often very severe, or even fatal. The symptoms usually start at a young age and are progressive.

Why UMD?

The great diversity, complexity and rarity of inherited metabolic diseases require more focused and integrated attention, increased awareness and financial support for scientific research.

This is needed to improve future perspectives and outcomes for patients and their families in the coming years. To address these requirements in an integrated way, we founded ‘United for Metabolic Diseases’ (UMD).

UMD is a unique collaboration between medical doctors, researchers and laboratory specialists of the metabolic centers of expertise in the Netherlands and the Dutch umbrella patient organization ‘Volwassen, Kinderen en Stofwisselingsziekten’ (VKS).

UMD’s mission is to apply and translate innovative research and technology into improved diagnosis, treatment and care for all patients and families suffering from an inherited metabolic disease.

Call for UMD Catalyst Grant proposals: Submit before 1st of October 2019.

UMD aims to promote research improving diagnosis, prevention, treatment and care for patients and families with an inherited metabolic disease through UMD Catalyst Grants.

Projects that fit within the UMD objectives and within one (or more) of the UMD themes are eligible for funding. Researchers can submit an application for a project or for the start/part of a project and the grant can be used to cover research materials, bench fee or personnel with a maximum amount of € 20.000.

There will be four UMD Catalyst Grant rounds each year and thus there will be a quarterly deadline for submitting applications. The first deadline for submitting an application is the 1st of October 2019. Each proposal will be reviewed by 3 members of the UMD board and decisions will be made within one month after the submission deadline and sent to the applicants with feedback.

Forms:

  • The UMD Catalyst Grant Proposal form can be found through this link.
  • More information about the guidelines and requirements can be found here.

For more information or questions regarding the UMD Catalyst Grant procedure, please contact Eline Kuipers, UMD program manager (e.n.kuipers@amsterdamumc.nl)

Tailored treatment and care

The metabolic catalyst wheel: UMD is all about the patient.

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Activities within the UMD are centered around the patient. The goal is to catalyze translational research into a healthy future for all individuals with an inherited metabolic disease. The patient can enter the metabolic catalyst wheel at any phase of the program. The aim is to let the patient follow the wheel towards tailored treatment and care.

United for Metabolic Diseases (UMD) is a unique, innovative and multidisciplinary collaboration with the common goal to perform innovative research in order to improve diagnosis, prevention, treatment and care for patients and families with an inherited metabolic disease.

The Metakids Foundation facilitated the establishment of the UMD with revenues from the ‘VriendenLoterij Prijzenmarathon’ in 2018 and will do so for at least the next 5 years. In addition, the Metakids Foundation and the UMD will collectively and separately raise additional funding to maintain and further develop UMD into a sustainable collaboration.

©UMD 2018 - 2019