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The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is a 501 (c)3 charitable organization whose mission is to eliminate FOP as a health concern through Education, Advocacy, Research and Support.
The aim of the IFOPA's programs and services is to provide education, support and research for those concerned about FOP.
- Funding FOP research at the Center for Research in FOP and Related Disorders at the University of Pennsylvania School of Medicine
- Development, publication and distribution of newsletter (FOP Connection, a quarterly newsletter that features pictures and articles about members, fundraising events, donor acknowledgement, research developments, and suggestions and resources for living with FOP and Milestones, a semi-annual newsletter for donors that focuses on research developments), brochure, videos and awareness materials
- The IFOPA website at www.ifopa.org provides the public with accurate information about FOP, families affected by it, and developments in medical research
- LIFE Committee, "Living Independently with Full Equality", helps people who have FOP find resources and adaptive equipment to increase their independence and quality of life. Read about LIFE and fill out the application form by clicking here
- What is FOP? A Guidebook for Families and What is FOP? Questions and Answers for the Children are the first comprehensive resource package written for families dealing with FOP
- FOPonline is an online group where people with FOP can discuss their concerns and share their stories. (More information | Guidelines)
- The Betty Ann Laue/IFOPA Resource Center is a central clearinghouse for information about FOP. The Resource Center offers scientific and medical articles, medical binder kits, emergency cards, interesting stories on FOP members and fundraisers, videos, and more. It is located at the IFOPA office in Florida
- Symposia, gatherings and meetings - brings together FOP patients with health professionals who specialize in FOP. These gatherings provide a unique opportunity for FOP patients to gather in a collaborative forum to discuss FOP research, exchange information and experiences, share coping strategies, and much more
- Traveling Resource Center (TRC) - designed to provide the global FOP community with a traveling showcase of tools and gadgets available for use in everyday living
- Mentoring - designed to provide members of the FOP community the opportunity of having a mentor as a means to better guide him or her through the challenges of FOP
- E-Learning Events - aims to provide and share information among members about overcoming and integrating common obstacles and everyday situations through video seminars and other web-enhanced communication methods
- PrayforFOPHealing is an online group that gives IFOPA members an opportunity to share prayer requests, inspirational quotes and poems and talk about how faith sustains them
- FOP Connection is the IFOPA's quarterly newsletter. It features pictures and articles about members, fundraising events, donor acknowledgement, research developments, and suggestions and resources for living with FOP.
- Milestones is a semi-annual newsletter for donors that focuses on research developments.
- Karen Revels
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