Expert Tips and Collaborative Creations
My work is incredibly meaningful, and I truly love what I do. Unfortunately, in both fields I’m active in, I’ve also encountered something far less beautiful: an overwhelming amount of jealousy. And that’s a shame. Because together, we have the potential to be so much stronger and make the world a far better place.
This is one of the reasons why I chose to work independently, to be there for the people and organizations who want to collaborate, grow, and make a difference. Those who are not interested are free to make their own choice, and that’s completely okay.
What I genuinely enjoy and find fascinating is networking. Through this, I’ve discovered an incredible number of powerful, valuable, and inspiring initiatives. And I want to give them a platform on my page as well, because, as I always say: “Together, we are stronger.”
You’ll find the Ehlers-Danlos syndromes section at the top of the page, followed by the Veterans Community just below it. Each area highlights the initiatives, stories, and collaborations that make these communities so powerful.
Ehlers-Danlos Syndromes
Pathways To Trust is a nonprofit organisation dedicated to elevating the voices of people with rare diseases, ensuring their needs and experiences are heard and addressed in the healthcare system.Their core belief: once patients with rare diseases are included in conversations about care, much of the bias, misunderstanding and neglect they face can be overcome.
They create disease-specific educational programmes for medical students, healthcare providers and patients, developed by patients and patient advocates themselves.By bringing together patients, caregivers, clinicians, health-systems, industry stakeholders, and advocacy voices, they aim to build trust and drive patient-centered, empathetic, and effective care.
It is a nonprofit organisation dedicated to supporting people with Ehlers-Danlos Syndrome (EDS), their caregivers, and health-care professionals. It started in 2011, when the president and his daughter created the awareness program to help those affected by EDS.
The organisation aims to increase understanding of EDS — among patients, the general public, and medical communities — and improve quality of life for those affected and their support networks.
The Connective Tissue Coalition is a nonprofit organisation supporting people with connective-tissue disorders such as Ehlers-Danlos Syndrome (EDS), Marfan Syndrome, and Loeys-Dietz Syndrome. Their mission is to drive research, raise awareness, and provide resources to individuals and families affected by these conditions.
They fund and support scientific research via a grant programme — providing seed funding for studies into connective-tissue disorders.
They offer resources, education, and support for patients and their caregivers, including information about diagnoses, related conditions, support groups, and disability eligibility.
They facilitate community support, advocacy, and general awareness campaigns to improve care, understanding, and early diagnosis for these syndromes.
Connective Tissue Coalition | Ehlers-Danlos Syndrome
Veteran Community
Sheila's Booklets
Sheila’s Booklets empowers children growing up with a parent affected by PTSD, particularly in families of uniformed professionals. PTSD can be confusing and frightening for children when a parent becomes distant, sad, or overwhelmed. The booklets, available in Dutch and English, transform complex emotions into warm, accessible stories featuring relatable animal characters.
Each booklet provides comfort, clear explanations, and the vital message: it’s not your fault. The goal is to strengthen communication within the family, reduce fear and guilt, and help children feel seen and supported.
By making these resources freely available to affected service families, Sheila’s Booklets offers a safe and nurturing way for children to understand their parent’s condition, opening the door to understanding, healing, and hope.
Stichting Veteranen Kids supports children of veterans, offering a safe space where they can connect with peers who share similar experiences. Growing up with a parent in the armed forces can be challenging — frequent deployments, long absences, or the emotional impact of service can affect children in unique ways. Through social events, outings, and a private community, the foundation helps these children feel understood, reduce feelings of isolation, and build friendships. While not a therapy service, it provides guidance and referrals to professional support when needed.
G.O.C. Parkstad is a welcoming meeting centre for veterans, (former) uniformed personnel, and their families. Through regular meet ups, a cosy drop in facility and volunteer driven support, they offer a place where people with shared backgrounds can connect, share experiences and find understanding. With zero‑line (immediate, informal) assistance, G.O.C. Parkstad provides a safe haven when times are hard. In a friendly, inclusive environment, over coffee or during joint activities, nobody stands alone.