Our independence
In recent years, we have seen how much self-help can depend on public funding and how quickly funds are cancelled if projects are not in line with third-party interests or politics.
That's why we see independence today as freedom from interests, whether they come from industry, the public sector or other major donors.
For us, independent self-help means:
We design content, topics and projects exclusively according to the needs of people with mast cell diseases.
We work scientifically.
Everything we research, prepare, publish comes from our own organization.
The added value remains with us and we do not give any content control to the outside world.
Complex, impacted health care system
The healthcare system is highly complex and is shaped by many actors with very different interests.
For those affected, it is often not comprehensible who plays which role and how decisions are made.
Orientation therefore requires not only medical knowledge, but also an understanding of these structures.
Ultimately, one thing counts most:
help those affected as quickly and unbureaucratically as possible.
What we have learned
In recent years, we have seen that even projects that we have assessed as necessary together with leading international researchers have not been supported by the public authorities.
Our central insight
Just because something is in the interest of patients doesn't mean it's taken into account or funded within existing funding logics. This shows us that the interests of third parties and the needs of patients cannot always be reconciled.
Therefore, a strong, independent self-help is needed again, which speaks for those affected and their interests, who cannot do it themselves due to their challenges in dealing with illness, the severe, lack of effectiveness of guideline therapies or many other topics.