Clinical Expertise
Clinical Outreach
Patient Organisations
Prof. Callewaert and his team are dedicated to fostering a strong and meaningful collaboration with various patient organizations, both nationally and internationally. Through these collaborations, we aim to bridge the gap between scientific inquiry and the lived experiences of those affected by various rare conditions. By working hand-in-hand with the patient community, we strive to ensure that our research translates into tangible improvements in healthcare practices, policies, and outcomes, ultimately enhancing the well-being of individuals and communities on a national and international scale.
NATIONAL
RaDiOrg
RaDiOrg is the Belgian umbrella organization for people with a rare disease. It covers all associations of patients with rare diseases and provides everyone with advice and assistance.
Their mission is to ensure that the voices of people with a painful condition are heard by policy makers and political leaders. RaDiOrg wants to lead the way with reliable information and publicize activities for people with rare diseases.
INTERNATIONAL
Myhre Syndrome Foundation
Myhre Syndrome Foundation is a patient advocacy organization dedicated to providing hope and improving the lives of those impacted by Myhre syndrome.
The Myhre Syndrome Foundation fosters collaboration among all relevant stakeholders to build a strong, global community in order to advance research, as well as support, educate and advocate for those impacted by Myhre syndrome.
Cutis Laxa Internationale
Cutis Laxa Internationale is an international patient organisation for patients who are diagnosed with cutis laxa, and their caregivers. The aims of the organisation are 1) To break Cutis Laxa patients’ isolation and loneliness, whatever the country they live in; 2) To promote research.
They further want to:
- allow patients not to be isolated, excluded from society.
- allow them not to be neglected by medical research, helping with making their census and informing them on research findings on Cutis Laxa as well as any other scientific findings that may have an impact on.
- get this rare disorder known and recognised and gather together all data about it.
- improve care and quality of life for patients, whatever their disorder is.
- be an advocate to improve how the society recognises and cares, at all levels, for patients in general and rare disorders issues particularly.
A Twist of Fate-ATS
When her youngest son was diagnosed with ATS, at age of two, the complete absence of guidelines, risks, prognoses or treatments at that time made Andrea Taylor determined to find answers. In March of 2014, 3 new ATS families contacted her about a week apart. It quickly became obvious that we needed an official patient group to stimulate research, produce information, and to save the children born with ATS. The nonprofit (501c3), A twist of Fate was born.