Stop broze botten! En Collageen Bindweefsel Aandoeningen (CBA).
COLLAGEN
CONNECTS
More than 30,000 people in the Netherlands suffer from CCTD.
The incorrect production of collagen protein causes connective tissue abnormalities.
People with CCTD therefore experience pain, fractures, and limitations on a daily basis.
CCTD leads to rare conditions such as Osteogenesis Imperfecta, Ehlers-Danlos Syndrome, Marfan Syndrome, Loeys-Dietz Syndrome, Hypertrophic Scars, Muscular Dystrophies, Scleroderma, Rheumatoid Arthritis, Stickler Syndrome, Alport Syndrome. How this affects us:
> 1000
people with
Brittle bones
> 23.000
people with
Sore muscles
> 900
people with
Sensitive skin
> 4500
people with
Thin blood vessels
> 6000
people with
Severe fatigue
What can we do about it?
Effective Medication
In collaboration with academic hospitals, patient organizations, and universities, we are looking for ways to cure CCTD. We facilitate knowledge sharing and collaboration for targeted research into effective treatment.
Fear- & Pain-Free
Treatment
Without medication, the consequences of CRCTD are life-altering. That is why we are committed to anxiety- and pain-free treatments. To minimize traumatic experiences and improve quality of life.
Wheelchair accessibility
40% of CCTD patients are wheelchair-bound. Wheelchair accessibility is key to a better life for them. Together with other non-profit organizations, we are committed to Freedom on Wheels in the Netherlands.
What exactly is CCTD?
Six inherited related collagen types cause severe connective tissue disorders. These are caused by mutations in genes encoding collagen-related proteins.
This can affect your body in various ways.
Brittle bones and cartilage
Collagen connective tissue disorders cause the body to produce less strong and flexible supporting tissue, resulting in bones breaking more easily and cartilage wearing down faster. This leads to painful joints, instability, and an increased risk of osteoporosis or osteoarthritis.
Skin, tendons, and muscles
They also cause the skin to lose its elasticity and age more quickly, making it vulnerable and susceptible to damage.
Tendons and muscles become overloaded or tear more quickly because the supporting tissue is too weak to absorb forces properly.
Internally and in blood vessels
They can weaken the internal connective tissue, causing organs to be less well supported and potentially lose their function.
In blood vessels, weak collagen makes the vessel walls vulnerable, which can lead to dilation (aneurysms), bleeding, or poorly perfused tissues.
Why the Power Of Reflection Foundation?
In search of effective medication, we connect hospitals, experts, and patients to conduct targeted research into cures.
By highlighting cross-fertilisation of knowledge, experience and similarities of different connective tissue disorders, we provide connecting collaborations.
Give us perspective
Many CCTD patients have actually given up hope
of ever seeing a cure in their lifetime.
Give them the opportunity to receive medication that will improve their quality of life.
SUPPORT
US
With your support, we can continue our efforts!
- We advocate for more research into effective medication.
- Better application for anxiety- and pain-free treatments
- For wheelchair accessibility, a life-altering consequence.
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