Why Advocacy?
Since its inception, the IPPF has had a strong commitment to advocacy. Our goal has been to promote favorable government policies to create awareness and accelerate the pace of scientific discovery for pemphigus and pemphigoid.
Through collaboration with other nonprofit patient groups, rare disease organizations, scientific investigators, industry stakeholders, and legislators, the foundation participates in advocacy initiatives that benefit people living with pemphigus and pemphigoid, enhancing quality of life. Increased education about the IPPF community will help lead to better and safer treatments, and possibly even a cure. Here are just a few ways that advocacy helps:
- Builds awareness among new physicians to increase patient access
- Encourages patients to share their stories enhancing our informational brochures, pamphlets, and newsletters
- Creates opportunities to collaborate with pharmaceutical companies on the leading edge of treating our disease
- Promotes relationships with researchers publishing information about the diseases and stimulates clinical trial activity
- Fosters funding for research and patient support programs that benefit you
“You are a very important part of the process, and you can make the difference, as you are the voices your legislators and congressional members want to hear.”
As rare diseases, pemphigus and pemphigoid are not well recognized, understood, or researched. Thus, advocacy by the foundation and its community is instrumental in moving forward. Additionally, the IPPF advocates in support of many other rare disease and skin disease organizations. While the population they serve may differ, their goal of improving the quality of life for patients is the same as ours. By working together we have a larger, stronger, and louder voice!
We are all advocates for patients with pemphigus, pemphigoid, and rare diseases. You are a very important part of the process, and you can make the difference, as you are the voices your legislators and congressional members want to hear. The IPPF urges you to contact your senators and representatives about issues that help our community as a whole. Don’t stop there, though! Share your actions with your family, friends, co-workers, and any other people who might be interested in advocating on behalf of the rare disease community. Encourage them to get involved.
As you can see, there are many reasons to advocate, and by banding together we can improve the quality of life for all people affected by pemphigus and pemphigoid!