What has ARCH to do with arthritis?
Systemic autoimmune diseases often include ‘rheumatic’ complaints such as pain or inflammation of the joints, and autoantibodies that damage the body’s own proteins. These complaints are common in rheumatic diseases and as such systemic autoimmune diseases are encompassed in the field of rheumatology. However, they are ‘systemic diseases’ which means that the kidneys, lungs and skin can also be affected and this is why internists, particularly nephrologists, pulmonologists, dermatologists and other specialists also treat these diseases.
Why was ARCH established?
Access to high level expertise on rare systemic autoimmune diseases is not yet easily accessible. Patients living further away from a centre of expertise often have to travel when the necessary treatment could be offered just as well in their own local hospital. And because the treatment of these diseases is fragmented, new knowledge and experience is not being gained quickly enough. ARCH wants to use its network to pool and homogenize knowledge and expertise and make it more accessible.
Can I get involved? I have a rare arthritis condition.
Unfortunately, that’s not possible. We expect to be able to treat the first patient with systemic sclerosis through ARCH in a pilot in 2019.
Does ARCH have offices I can visit?
No. ARCH is in its start-up phase and does not have a visiting address. If you would like to speak to someone about ARCH, please use the contact form or email us at firstname.lastname@example.org.
Can I contribute to ARCH?
ARCH is still being developed but we will need input from stakeholders at various points. Your experience and the information you have on certain rare forms of arthritis can therefore be very important. Let us know by email (email@example.com) if we can contact you. Financial contributions are also welcome, and again, you can email us about this.
How can I stay up to date with ARCH developments?
ARCH publishes a newsletter with the latest ARCH developments a number of times a year. Would you like to receive the newsletter?
When was ARCH founded?
The ARCH foundation was officially founded on 18 November 2016.
Does ARCH also work with international initiatives?
Our focus is initially on the Netherlands and this means we should be able to develop more quickly. Our contact with international initiatives keeps us up-to-date with developments and we share experience so that there will be no reinventing the wheel anywhere.
What is the relationship between ARCH and ReumaNederland?
ReumaNederland wants to fight rare forms of arthritis and believes that all those with a rare condition should have access to the best possible care, knowledge and expertise. For this reason, ReumaNederland is financing ARCH. The initial subsidy of 6 million euro will ensure that the care for these patients will dramatically improve in the coming years.
ReumaNederland is therefore the initiator and sponsor of this wonderful project and we report to ReumaNederland on an annual basis although they have given the Supervisory Board the role of supervisor. ReumaNederland remains very committed to the project and gives us every confidence and freedom in our work.
Why has ARCH chosen to start its work with systemic sclerosis?
Major progress had been made over the past few years in terms of systemic sclerosis such as in the setting up of a well-organised patients’ association, a detailed care plan and an alliance between academic centres. Together this means ARCH can get straight down to work with this disease.
Who is involved in ARCH?
ARCH has a supervisory board, an executive board, a project team and various disease-specific working groups. In addition, patients, healthcare professionals and other stakeholders are intensively involved in ARCH.
What is ARCH short for?
ARCH is the English abbreviation of Arthritis Research and Collaboration Hub.
Which rare forms of arthritis does ARCH cover?
ARCH focuses on those rare forms of arthritis known as systemic autoimmune diseases. We looked into which rare diseases we could do the most for the patient for in a short period of time and opted for systemic sclerosis, antiphospholipid syndrome, ANCA associated vasculitis and systemic lupus erythematosus. Other rare conditions may be included in ARCH at a later date.
How is ARCH financed?
ReumaNederland is providing start-up funding of 6 million euro phased over a period of five years so that ARCH can achieve its goals. From 2022, ARCH will need to be able to draw on its own funds for its work.