Every day we hear from individuals living with primary immunodeficiencies (PI) who are searching for information. We know there are people who struggle with feeling isolated and would be grateful to meet others living with a rare, chronic disorder like PI. Information can be difficult to find, and members of the PI community often feel alone in their struggle.
IDF is well known for its educational materials and programs about PI. We have a wealth of resources, groundbreaking education and information from a legion of dedicated healthcare, insurance and lifestyle professionals. The hurdle we face is getting these resources into the hands of those who need them the most—people living with PI.
Through the IDF Outreach Initiative, volunteers serve as Liaisons and Get Connected Leaders to help us reach those in the PI community. Volunteers serve critical roles in two ways:
IDF Liaisons are volunteers trained to specifically connect and build relationships with healthcare professionals who care for individuals diagnosed with PI, as well as with clinicians who are likely to see these patients. Liaisons will encourage clinicians to discuss and share information about IDF with their patients and provide them with IDF resources. They will keep the medical staff apprised of new IDF programs and materials and ensure they have an inventory of supplies to distribute to their patients. Liaisons may also contact local medical associations to present information about IDF and the publications and programs IDF offers for healthcare professionals.
Sometimes individuals and family members simply want to talk with someone who understands what it’s like to live with PI. They find value in actually meeting others in person, learning the latest about PI and connecting about much more than their diagnosis. The IDF Outreach Initiative encourages individuals living with PI to get together in their local areas through IDF Get Connected Groups.
Volunteers act as Get Connected Leaders and plan, organize and attend the gatherings. These groups are in-person networking opportunities designed to bring together individuals from the PI community in their local area. Get Connected Leaders facilitate a welcoming environment conducive to sharing ideas and support, so that participants feel a sense of belonging to the IDF community, assuring them that they are not alone.
The scheduling of IDF Get Connected Groups is flexible—some meet monthly, while others may meet only twice a year. Meetings are held in coffee shops, libraries, restaurants or other community gathering spots. Discussion topics are offered, but usually, participants enjoy the opportunity to just discuss the issues they face with living with PI.
These groups supplement IDF’s statewide educational meetings.
IDF staff members work together with IDF Liaisons and IDF Get Connected Leaders to assure they are prepared to be successful in their activities. IDF provides an orientation, training, prepared materials, administrative support, guidance and encouragement every step of the way.
These are exceptional opportunities for motivated individuals who want to make a difference for others living with PI. They understand the importance of education, understanding and encouragement in helping individuals live a fulfilling life with PI.
To find out more, contact IDF: 800-296-4433 or firstname.lastname@example.org
The IDF Outreach Initiative is supported by Lead Sponsor Shire.