Countdown to Moebius Syndrome Awareness Day 2019

Ameriface

About: AmeriFace was founded in 1991 to provide educational and emotional support to persons born with craniofacial anomalies and their families. The organization soon expanded to also serve persons with acquired facial differences due to burns, trauma and disease, and in 2004 partnered with cleftAdvocate under the same corporate umbrella.  Programs also include support networks for Crouzon, Goldenhar and Treacher Collins syndromes.


Services include referrals to qualified cleft/craniofacial teams, access to educational materials about these medical conditions, emotional support for affected individuals and their families, a campaign to promote general public awareness about facial differences and the networking of individuals and families for support purposes.

Our programs provide educational and networking opportunities for families on a daily basis through the Pathfinder Outreach Network, a nationally-recognized program offering a toll-free support hotline, on-line support forums, comprehensive websites, newborn outreach programs at area birthing hospitals throughout the country, an annual family conference and periodic newsletters.

Volunteer staff and peer counselors strive to educate medical and other professionals about the needs of families, both medical and emotional. We work to see a time that no newborn is sent home from the hospital without a proper feeding device and a referral to a cleft/craniofacial team.

We address healthcare disparities in the craniofacial patient population by educating families about the need for interdisciplinary team care and by helping to secure insurance coverage and/or other medical financing through social programs and like-minded charities. We look forward to a time when insurance coverage will not be a battle of “cosmetic” versus “reconstructive” or “medical” versus “dental”.

 By increasing public awareness, it is our goal to see a time very soon when persons with facial differences are accepted for who they are, and are not judged by their appearance by the general public, educators, employers, and even members of their own families.

www.ameriface.org
www.facebook.com/AmeriFace-111512022228630


RareConnect

About: RareConnect includes disease-specific online communities that enable people living with rare diseases to meet, share stories and learn from each other. Communities are created in partnership with patient groups who bring resources such as moderators, relationships with specialists and validated information. 

www.rareconnect.org

www.facebook.com/rareconnect

www.twitter.com/RareConnect


National Organization for Rare Disorders

For many years, people with rare diseases walked alone. Patients and their families coped with daunting medical and financial issues with few resources and no one to guide the way. Then, a small group of patient advocates formed a coalition to unify this community and mobilize support to pass the Orphan Drug Act. In 1983, the coalition became NORD, the National Organization for Rare Disorders. For more than 30 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies, advancing medical research, and providing patient and family services for those who need them most.  Read the full story of NORD and the rare disease movement here.

www.rarediseases.org

www.facebook.com/NationalOrganizationforRareDisorders

www.twitter.com/rarediseases


Eurordis

About: EURORDIS seeks to improve the quality of life of people living with rare diseases in Europe through advocacy at the European level, support for research and medicines development, facilitating networking amongst patient groups, raising awareness, and many other actions designed to reduce the impact of rare diseases on the lives of patients and family.

www.eurordis.org

www.facebook.com/eurordis


Global Genes

About: Global Genes™  is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009 , with just a few rare disease parent advocates and foundations , has since grown to over 500 global organizations.

Mission: To Eliminate the Challenges of Rare Disease. We build awareness, educate the global community, and provide critical connections and resources that equip advocates to become activists for their disease.

www.globalgenes.org

www.facebook.com/globalgenes

www.twitter.com/globalgenes


Rare Disease United Foundation
About: The Rare Disease United Foundation is the nation’s leading rare disease advocacy organization. We are a non-disease specific, community-based organization, working at a state-level on legislation that has a direct impact on people living with a rare disease, providing support locally, and establishing relationships at local hospitals and medical schools. RDUF has also created groundbreaking programs like our Rare Care Collaborative Project which is a lecture series by rare disease patients and caregivers to 1st and 2nd year medical students and our Beyond the Diagnosis Art Exhibit which will travel around the country to medical schools and hospitals. Living rare has led RDUF to create programs that directly address our unmet needs. Our mission is to create real change for the rare disease community. Change for Rare is Here!
www.rarediseaseunited.org
www.facebook.com/rarediseaseunited
www.twitter.com/RareDiseaseUntd


About Face, The Craniofacial Family Society
About: We are AboutFace and we’re here for anyone and everyone living with a facial difference. That includes those affected directly or indirectly. And whether it’s been with you from birth or is an acquired difference, we know the circumstances you face will be unique. However our mission since day one has remained the same. AboutFace is here to provide you with support. To inspire you and give you the courage and confidence you need to make your day, every day, no different to anyone else’s. Because for us there should be no difference living with a facial difference.

We’re here for advice and support. We provide education and we’re a useful source of information. And we also see it as our role to generate as much public awareness and understanding of what living with a facial difference means to those affected.

That’s why if we had to sum up what AboutFace was all about in three words we’d say:

AboutFace ENCOURAGES – We believe knowing you are not alone is the first step in embracing the journey.

AboutFace EMPOWERS – We believe building on strength and character helps develop a sense of purpose.

AboutFace EDUCATES – We believe education is critical to nurturing understanding and acceptance
.
www.aboutface.ca

www.facebook.com/AboutFaceInternational

www.twitter.com/AboutFace