The Alport Syndrome Foundation is one of 14 patient advocacy organizations that has received Global Genes‘ 2017 RARE Patient Impact Grants, for their work supporting patient communities of rare diseases.
The initiative was launched at the 2015 RARE Tribute to Champions of Hope to offer financial support to patient advocacy foundations and organizations. The program offers two categories of funding: RARE Innovation and RARE Support.
“I’m overwhelmed with joy that the RARE Patient Impact Grant program continues to grow and distribute funds to such a worthy recipient base,” Nicole Boice, founder and chief executive officer of Global Genes, said in a press release. “Imagine how much closer we could be to finding cures and treatments if Global Genes could grant funds to all applicants – we want to do more,” she said.
The awardees for 2017 are:
- AMEN Support: Empowering Patients through Multiple Endocrine Neoplasia (MEN) Education
- Bohring-Opitz Syndrome Foundation: 2017 Bohring-Opitz Syndrome (BOS) Meet Up
- CureDuchenne: Durable Medical Equipment Guide
- PKD Foundation: Autosomal recessive polycystic kidney disease (ARPKD) Patient and Caregiver Handbook
- Alport Syndrome Foundation: ‘Ask the Experts’ Webinar Series – monthly opportunities to consult with an expert who provides educational information on a topic of interest to the Alport community
- SBS Cure Project: Medical or Education Travel Grant
- The Marfan Foundation: Conference Scholarship Program
- Platelet Disorder Support Association: ITP Community Network
- Cardio-Facio-Cutaneous International: A Day of Caring at the CFC International Family Conference
- Fibrous Dysplasia Foundation: Expanding Access to the FDF Patient & Family Conference via Livestream
- Cure Sanfilippo Foundation: Development of Global Clinical Guidelines for Sanfilippo Syndrome
- Global Foundation for Peroxisomal Disorders: Zellweger Spectrum Disorder Focus Group Project
- Angioma Alliance: New Mexico CCM Patient Engagement Project
- The Brain Recovery Project: Frog Hand
Global Genes is working to grow its signature program annually and wants every RARE Foundation Alliance member organization to apply and attempt to receive this program’s funding.
Being a member of the RARE Foundation Alliance brings some benefits, such as exclusive access to RARE Networking and Sharing, which includes quarterly webinars, private facebook discussions, tech support and priority registration for Global Genes’ advocacy events, among others.
To be eligible, an organization is required to have is a website, or a Facebook page, providing access to information, offering rare disease information or support in one of the following areas:
- Patient/caregiver support
- Healthcare provider education
- Public awareness and advocacy
Go here to get involved in a local event, donate or to help the organization spread the word about the RARE Grants.
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