Thrive Rare: Embracing the Uniqueness Within
Dear fellow rare community, It is with great joy that I share my journey of self-discovery and self-love with you. It took me a while
Koolen-de Vries Syndrome Foundation
Koolen-de Vries Syndrome Foundation
Our mission is to educate, increase awareness and promote research for the support and enrichment of individuals living with Koolen-de Vries Syndrome (KdVS) and their families.
In order to fulfill our mission we aim to:
- Act as an international group, supporting, informing and networking with anyone affected by KdVS and with any interested professionals.
- Promote awareness of KdVS.
- Bring families and individuals affected by KdVS together in order to support one another.
- Support and promote relevant research projects and encourage participation from individuals with KdVS.
- Collaborate with our Medical Advisory Board to provide up to date information regarding new KdVS research, surveys, findings and medical advances.
- Help facilitate social gatherings and educational events for individuals and families affected by KdVS and medical professionals and/or support staff.
- Ensure that hospitals, doctors, health authorities, genetic clinics and other professionals are aware of the foundation so that patients can access the resources available to them.
- Give presentations about KdVS to parent groups, professionals and the general public.
- Represent the voices and perspectives of individuals and families affected by KdVS by participating in professional working groups, advisory boards, committees and conferences worldwide.
- Raise funds to support the group’s activities and produce literature to make others more aware of KdVS.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Patient Worthy Posts on Koolen-de Vries Syndrome
Becoming a Rare Role Model
My name is Becky Tilley. I live in the UK, am married, and my wonderful husband Carl and I have three children: Isabella (age four),
Finding Purpose on an Unexpected Journey
Hi, my name is Becky. I am age 38 from the UK and am a proud wife to my wonderful husband Carl and mother
The Strength of Rare: Life as a Koolen-De Vries Syndrome Patient, Parent, and Caregiver, Part 2
Continued From Part One Written by Becky Tilley Finally I found a role that I was appreciated in, at least by the kids. I wasn’t
The Strength of Rare: Life as a Koolen-De Vries Syndrome Patient, Parent, and Caregiver, Part 1
Written by Becky Tilley My name is Becky Tilley and I am a rare woman, mama, writer and advocate. Also am proud wife to my
