In August 2019 we conducted a global survey in order to determine the needs of patients and families.
The main results of our global survey are described below.
What type of support do you need?
- Meeting other patients and families to exchange knowledge and experience (63 %).
- Information about possible treatments (54 %).
- Personal medical advice, medical diagnosis (50 %).
- Finding a medical specialist in my country who is familiar with CMTC and/or blood vessel diseases (50 %).
What kind of issues did/do you experience?
- Finding a medical specialist who is familiar with CMTC and/or blood vessel diseases (57 %).
- I’m scared about the future of my child (44 %).
- People are staring at my child giving strange looks and questions/comments (39 %).
What are your information needs?
- Contact with knowledgeable medical specialists (54 %).
- Personal stories of patients (and families) (50 %).
- Possibilities to ask questions (42 %).
The questions have been answered mainly (88 %) by the parents of patients.
What actions are we going to take (based on questions and comments):
- Organise more opportunities for patients and families to meet (virtual and/or in-person).
- Make the role of Patient Advocate clearer.
- Educate our Patient Advocates.
- Recruit more Patient Advocates.
- Add more articles to our website about possible treatments.
- Continue with our personal medical advice initiative and look into online solutions.
- Add personal stories to our website and ask people to share theirs.
- Share website content frequently, e.g. once a week, via social media channels on topics such as psychological aspects of living with a rare disease.
- Enable members (who are not able to attend our global conference) to virtually participate by means of Internet technology.
- Pay more attention to Other Vascular Malformations communication next to CMTC.
