Swiss Society for Porphyria

1. To promote and safeguard the interests of porphyria patients
2. To network porphyria patients and individuals who are affected by porphyria or have a general interest in porphyria
3. To exchange information between members
4. To promote porphyria awareness
5. To safeguard the recognition of patient concerns by the public, political stakeholders and society
6. To promote active patient participation in the healthcare system
7. To ensure equality in access to healthcare and in reimbursement of therapy costs
8. To promote scientific and medical education as well as medical support
9. To foster networks with domestic, international and umbrella patient organizations
The objectives above translate in activities such as:
     1. Two annual meetings
     2. Trilingual Homepage
     3. Media campaigns
     4. Contributions to national and international healthcare conferences and podium discussions, especially to raise awareness about medicine access challenges
     5. Science Slam appearances to raise awareness on porphyrias
     6. Porphyria flyer for physicians
     7. Porphyria emergency card for patients
     8. Database of Swiss drugs for physicians and patients
     9. Active participation in regulatory and HTA processes nationally and internationally
     10. Contributions to changing healthcare legislation related to orphan drug access
     11. Reimbursement of medicines supported by a dedicated legal counsel