IPPF

Many patients and caretakers ask, "What can I do?" or "What difference can I make?" While it is true that by yourself it is tough to make a difference, it is also true that those who speak loudest get heard -- Here's what you can do -- get involved and advocate!

Educate yourselves and others regarding the issues, including effective diagnoses, more successful treatments, and useful coping mechanisms. In addition, learn more about our medical care and disability system, the budgetary reductions in government funding for medical research, and the difficulty of encouraging for-profit corporations to invest in research for "orphan" diseases.

Speak Out: Speak, share your stories, and add your opinions to the larger body of pemphigus/pemphigoid patients -- together with the IPPF we are a collectively louder voice that can and does get heard. Click HERE to hear Rebecca, IPPF Board of Directors, tell her story on the Richard Cohen Show.

Participate in the patient registry: To help doctors and researchers better understand the nature and natural course of this syndrome the IPPF is engaging in a patient registry. The registry provides resources for the scientific study of pemphigus and pemphigoid. Confidentiality of personal information regarding instance, genetics, clinical course, and prognosis is provided to professionals and families. The registry serves to improve communication of ideas among interested researchers. Your contribution in registering and completing the surveys associated with the registry makes a difference!

Act: Hold a local educational, support, or fundraising activity. if you have more time on your hands than money, consider using your energy to visit dermatologists offices in your area to bring them materials and spread the awareness about pemphigus/pemphigoid; print out advocacy letters to ask your congress people about supporting increased NIH funding for medical research for orphan diseases such as pemphigus/pemphigoid; offer to receive phone calls or e-mails to listen or share advice to others; or host a local fundraising events such as a garage sale, walk-a-thon, golf tournament, or a family and friends letter writing campaign to fund the work of the IPPF in providing education, support, and research opportunities.

Donate: As always, economies of scale and the opportunity to solicit "matching" grants from corporations and government programs make every dollar that you contribute to the IPPF provide services of a much greater magnitude. Although we understand that economic times are tough for everyone, if you have the means to make a financial difference in helping an individual, educating the doctor, or researching it here, please join the thousands of others whose support has already made a difference and continues to do so.