<div>*english translation at bottom

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<div>Lieve mensen, mijn naam is Geraldine en ik zamel geld in voor mijn dochter Nienke en mijn vriendin Noreen. Zij hebben beide de zeer zeldzame aandoening ROHHAD-NET.

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<div>ROHHAD-NET is (waarschijnlijk) een auto-immuunziekte waarbij de hypothalamus ontregeld raakt. De hypothalamus stuurt alle reflexen aan in het gehele lichaam. Denk hierbij aan ademhaling, hartslag, bloeddruk, temperatuur regulatie, stress hormoon, honger en dorst gevoel, zout/vocht balans etc…ROHHAD staat bekend als een progressieve aandoening waarbij er geen verbetering op kan treden maar alleen de symptomen behandeld kunnen worden.

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<div>In September 2025 is Nienke gestart met een behandeling bij Health Optimizing en dit geeft hele mooie resultaten. Nienke haar ademhaling is aan het verbeteren. Haar temperatuur regulatie gaat stukken beter en ze heeft veel meer energie gekregen waardoor ze een veel betere kwaliteit van leven heeft. Dit gunnen wij niet alleen Nienke maar ook anderen in Nederland met dezelfde diagnose!

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<div>Om Nienke te kunnen blijven behandelenen ook een traject voor Noreen te starten is er alleen wel financiële steun nodig. Wij hopen zoveel geld op te halen dat we ook de behandeling aan andere ROHHAD kindjes uit Nederland kunnen aanbieden. Dit is onze droom!

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<div>De behandeling start met een Assessment en een intensieve week van dagelijks behandelen. Elke behandeling kost rond de 400-500 euro en deze moeten, zeker in het begin, elke week herhaald worden. Na verloop van tijd kunnen de behandeling waarschijnlijk naar 2 wekelijks en daarna naar elke 4 weken. Bij een verergering van de klachten moet er weer tijdelijk intensief behandeld worden.

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<div>Onze vraag aan jullie is om ons te helpen om onze droom werkelijkheid te laten worden! Elk bedrag helpt…klein of groot. Wij zijn jullie enorm dankbaar!

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<div>Hi, my name is Geraldine, and I am raising funds for my daughter Nienke and my dear friend Noreen. Both of them suffer from the extremely rare condition ROHHAD-NET.

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<div>ROHHAD-NET is (likely) an autoimmune disease that causes dysfunction in the hypothalamus. The hypothalamus controls all bodily reflexes, such as breathing, heart rate, blood pressure, temperature regulation, stress hormone levels, sensations of hunger and thirst, salt and fluid balance, and more. ROHHAD is known as a progressive condition; there is no cure, and treatment focuses solely on managing symptoms.

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<div>In September 2025 Nienke began treatment at Health Optimizing, and the results have been wonderful. Her breathing is improving, her temperature regulation is much better, and she has gained a great deal of energy, leading to a significantly better quality of life. We want this not only for Nienke but also for others in the Netherlands with the same diagnosis!

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<div>However, financial support is needed to continue Nienke’s treatment and to start a treatment program for Noreen. We hope to raise enough funds to offer this treatment to other children in the Netherlands with ROHHAD as well. That is our dream!

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<div>The treatment begins with an assessment followed by an intensive week of daily sessions. Each treatment costs around €400–€500 and must be repeated weekly, especially in the beginning. Over time, the frequency can likely be reduced to once every two weeks and eventually to once every four weeks. If symptoms worsen, intensive treatment will need to be resumed temporarily.

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<div>We are asking for your help to make our dream a reality! Every contribution helps—whether large or small. We are incredibly grateful for your support!

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Anonymous

Joan Van Zon

Frank en Désirée van Soelen

Gillie taxichauffeur

Marte Bijnagte

Nathalie Gerrits -van den Hof

Jetske Vermeulen

Sylvia Krabbendam

Nico Van Eckeveld

Onderzoek en behandeling ROHHAD voor Nienke en Noreen

platform

Platform is iOS

Android

Adyen Google Pay Development Audience

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Deprecate Stripe Legacy

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PYMK has donors

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Onderzoek en behandeling ROHHAD voor Nienke en Noreen

Still €6,665 to go. Help us build momentum.