New to the Office. I’d like to welcome Noelle Madsen to the IPPF family as Patient Services Coordinator. Noelle has a background in health education, event coordination, and working with patients and physicians. She will join Marc Yale and the Peer Health Coaches helping new and existing patients, caregivers, and medical professionals every step of the way! If you will be in Chicago at the Patient Conference, stop by and welcome her aboard!
2013 Holiday Fundraiser. Wow! Let me say that again: WOW! Our 2013 goal was $50,000 and we not only surpassed it, we crushed it! This Holiday Season we raised over $64,000 that goes directly to supporting our patient services and education programs. Great job, everyone!!
Awareness. The IPPF was in full Awareness-mode at the California State Capitol and the United States Capitol. In Sacramento, I was joined by Kate Frantz, Monique Rivera, and Janet Segall for an afternoon of rare disease advocacy and awareness. The California State Assembly unanimously passed Assembly Resolution 32 recognizing February 28th as Rare Disease Day in California.
Meanwhile, Marc Yale was in Washington, D.C. advocating for support of HR 3116, The MODDERN Cures Act. HR 3116 provides incentives for development of cures and treatments for unmet medical needs. We ask you to contact your Representatives (www.contactingthecongress.org) and ask them to support HR 3116 (pemphig.us/hr3116-moddern).
IPPF joins RareConnect. RareConnect is a growing online network for rare disease communities, bringing together thousands of patients, families, and groups who might otherwise be isolated. Through RareConnect, patients and those who care for them can communicate, sharing experiences and information in a safe, moderated online forum. RareConnect allows patients from different countries to interact in English, French, German, Italian, or Spanish.
Join us at www.pemphigus.org/rareconnect and being connecting with others around the globe. . .for FREE!
That’s it for now. From all of us at the IPPF, we hope you have a great Spring and we’ll see you in Chicago!