Raising Awareness 2022
Orphan Healthcare offers direct support to those who are affected and provides comprehensive help. We use targeted campaigns such as Black Nose®️to raise awareness in society and reinforce the attention to the subject of rare diseases. Our main desire is to improve integration and the quality of life of affected children and their families.
By establishing contacts with international experts on the subjects, mediating important points of contact and promoting exchange of information, we support those affected in their often-difficult everyday lives.
Affected people urgently need specific an individual answers and a complete support management after their diagnosis.
There are too few medicines for rare diseases (Orphan Drugs, Orphan Diseases, Rare Diseases). Most of them are so expensive that many health and other insurances refuse to pay for them. Therefore, we take different paths. Developing new medicines or alternative treatments requires ideas, courage to be entrepreneurial and the corresponding partners.
We actively integrated partners and various sources through our development company Orphan Biotec to permit more cost-efficient research and development. Impact investors will play a great role in this in future.
Ideas are the roots of our innovation. Core items of our work are projects that are aligned with the demand of young and old patients, as well as the needs of the market. Those affected need direct help and support at once after diagnosis. They need specific answers and comprehensive support management.
We integrate those affected and those not affected. We give those affected a voice and a face with our BLACK NOSE campaign, which has already acquired international status.
We encourage them to commit to work in their own matters and those of others affected in our health promotional program ELFEN HELFEN.
This creates trust into our own resources, promotes resilience and shows those affected that they are not alone. We need others to create a network that we need to advance.
Tasks that are important and necessary for our social community but that cannot be
performed by the state anymore are now more and more often taken over by committed
Affected families are often alone with their questions and problems. Doctors, experts or authorities are unable to answer their urgent questions. Social systems, health and other insurances are unable to handle the many complex cases. In short: There is a lack of specific support, treatment and alternative options.
1 + 1 sometimes makes 3
In order to tackle the central tasks in the area of rare diseases, we have combined two innovative partners – a charity and a social company. Our business model is sustainably aligned this way; when both partners support each other and are more successful together, everyone can profit. Our first social partner is Orphanbiotec AG (direct link to the new website), the first pharmaceutical company in Switzerland with a socially compatible profit claim. Part of the profit from the developed therapies will go to the foundation. Our model has already been awarded 1st place of the Swiss young entrepreneur’s prize of SEIF in 2011.
We4Ukraine in Zurich
Short-term and effective: Qualifying affected families
Long-term support and qualification of families are our main desire and an important part of our promotional program ELFEN HELFEN. Together with our CSR partners (Corporate Social Responsibility), subject and education experts as well as patient organizations, we promote the affected persons’ self-competence as well.
Children and parents affected by a rare disease have many questions. We offer children and families important direct help for their everyday lives in addition to mediation of specific points of contact, information and exchange of knowledge and information.
In addition to respite days that enable children to have unique experiences in special locations, patient centered coaching is part of our promotional program ELFEN HELFEN as well. Trained coaches actively support those affected in their everyday lives and help strengthen their resilience (=psychological resistance).
‘Rare diseases’ become part of a modern and affordable health care system. Those affected quickly receive a diagnosis, affordable therapies and other alternatives. “Rare diseases” will be an integral part of medical research and development in the future.
CALL TO ACTION
How can YOU help?
The #we4ukraine initiative was created to offer medical assistance to Ukrainian refugees in Zurich.
Brave Girl by Leonardo Hidalgo
On Saturday the 21.5.2022 the Foundation OrphanHealthcare will held a Charity event and Live Auction in the Fame Gallery in Talstrasse 9. 8001 Zurich.