Conference participation

We regularly visit all sorts of conferences in both the Netherlands and abroad.

We try to increase our brand awareness and network in many ways with the aim of reaching out to patients, families and caregivers so that we can help them with, for example, personal medical advice or making contact with other patients and families. From our own experience, many people live with uncertainty and struggle to find the right information.

This article gives an overview of why we do this and what our benefits are.

1. CMTC, and many other blood vessel diseases, are rare so that in a small country such as the Netherlands there are too few patients to achieve anything. This means that we as an organisation must operate internationally. A few years after our founding in 1997, we discovered that we were being approached by patients and families from other countries. Many countries have rare diseases’s organisations for both specific rare diseases and umbrella organisations. These organisations visit conferences to establish contacts with other similar organisations. Through such meetings we reach patients, families and caregivers.
2. Through participation in the EURORDIS (European Organisation for Rare diseases) in the Expert Reference Networks and European Patient Advocacy Groups, our brand awareness/visibility is enhanced and it also allows our voice to be heard.  This also means that we keep up to date with the latest (medical) developments.
3. One of the biggest challenges of rare disease organisations is its visibility, and in turn, its ability to help patients and families. Altogether, around 7000 rare diseases are now known so that visibility/traceability is difficult. Proper diagnosis is a major problem which prevents the patient from knowing where to go for information. By participating in conferences we increase our visibility/traceability.  During the Global Skin Conference, the chairman of our CMTC-OVM organisation Lex van der Heijden gave two workshops in Italy. These events are announced through websites and social media, so that our visibility and traceability are increased.
4. We participate regularly in the Eurordis conference and patients are referred directly to us because we know the people within Eurordis personally. We are on their website and participate in the RareConnect initiative. This allows us to support more patients and families.
5. As we can meet and talk in person during conferences, contacts are made faster and discussion more successful. We are, therefore, better visible for all kinds of people (patients, families and caregivers) who approach us directly. For example, during the Euroris conference in 2019 in Bukarest, we contacted the President of the Slovak Organisation for Rare Diseases who then introduced us to a Slovak dermatologist. This allows us to better support patients, families and caregivers from other countries.
6. During conferences we are able to make personal contacts with a number of people and they are great opportunities for networking.  These events enable us to present our organisation in a professional and unique way. In addition, we can distribute leaflets about our organisation in several different languages. This has proved to be a great success for a number of years, allowing us to make people aware of our organisation, globally.
7. During a conference in Italy, participants were asked to dress in their country’s traditional clothes for dinner.  Lex wore an orange T-shirt and clogs – these were clearly audible on the stone floor!  Lex caught the eye of many people and he was asked to pose in several photographs! People will not forget this image for a long time!
8. Personal contacts provide an ‘award factor’ with the result that our organisation can be seen and approached earlier.
9. Our genetic research in Canada, among other things, is a direct result of a meeting with Dr. Millan Patel, at a conference in the USA.
10. During conferences, we participate in a wide variety of sessions which provide opportunities to make contact with medical experts. During a conference in Paris in 2018, we followed a session which was given by a Dutch medical psychologist Dr. Patrick Kemperman. He has now been included in our consultancy team.
11. Networking, establishing new contacts and maintaining existing contacts, is crucial in the world of rare diseases. Large organisations such as Eurordis and NORD have a very large network and a large international reach through their websites and social media channels. During conferences, photos and videos are shared through these channels (we do this ourselves) which greatly increases our global visibility.  This in turn, allows us to reach more patients, families and caregivers around the world.
12. We acquire a great deal of information at these conferences, which we can then use to enhance our own organisation and our own conferences. We also invite speakers that we have met at these events.
13. Thanks to our participation at international conferences, we are expanding our network by establishing contacts with representatives of umbrella organisations for rare diseases from other countries. For example, whilst at a NORD conference, we met with the president of the Indian Organisation for Rare diseases.  He now helps us to translate information to Hindi and Telugu, allowing us to reach further afield once again.
14. Another great benefit is that we can learn from each other.  We can find out what works and what does not work. During conferences networking is so important, for example, through the Global Skin Foundation, we have been able to connect with a pharmaceutical company that also has a corporate social responsibility programme. We may be able to recruit additional funding this way.
15. Conferences provide opportunities for patients and their families to share personal stories/experiences. By talking with others in a similar position, you can often find an answer to all sorts of questions.  For example, patients/families in the Netherlands can learn from other patients/families from around the world.
16. The more members/donors we recruit, the more income and the more patients and families we can help.
17. By participating in conferences, the knowledge that we have gained can be used to enrich our own website, therefore, benefiting many people.
18. At these events, we can make our voices heard, exert influence, talk/think along and make decisions. We are closer to the fire and have the most recent information.
19. During a conference in Italy, we attended a presentation on the use of social media by someone from a Canadian organisation. The speaker was a professional in the service of this organisation and offered to give free advice on the use of social media.  Another presenter from the USA has a company that performs analyses of various social media channels, and offered to give us advice in this area, free of charge.
20. Thanks to our personal contacts with the rare diseases organisations Eurordis (Europe), Global Skin Foundation (Canada), ICord (Worldwide) and NORD (USA), we regularly receive reimbursement of conference travel and accommodation expenses. This eases the financial cost of these essential visits, allowing us to use the funds to benefit our organisation in other ways.