Experience shows that building partnerships and forging unity & synergy in activities are keys to success. In rare disease advocacy, this is certainly true. That is why Cure AHC is at the forefront of advocacy in the greater rare disease community, and why we have built some key partnerships already in the process. These alliances will enable Cure AHC to:
- Keep AHC families up to date on the latest government policies and programs that benefit/affect the AHC sufferer
- Allow us to interact with key players in Industry, research, & government, to keep the AHC awareness fresh in their minds & open up more doors to funding
- Help us to learn and implement additional best practices to be of maximum effectiveness for our families.
- Empower Cure AHC to accelerate the timeline to get to the cure!
AHC Federation of Europe is made up of AHC Associations of Europe. Cure AHC will partner and support joint research projects like the Genotype/Phenotype Study. The purpose of the federation is to unite all AHC patient organizations in Europe, to create a synergy and a critical mass in order to achieve the following objectives:
- Promote the awareness of AHC at European level
- To promote and support the research on AHC
- To develop a better quality of life for all the persons affected by AHC and their families.
- Represent the European AHC community within EU in regards to social and health politics, investment in scientific research and drug development
Cure AHC works with the AHCFE on fundraising campaigns and on targeting research projects we can co-sponsor.
The Global Genes Project is the leading rare and genetic disease advocacy organization in the world. Cure AHC will participate as often and as completely as possible in Global Genes campaigns and is pursuing status as a Foundation Partner.Â Dedicated to help Patient Advocacy Groups raise awareness & fund-raise. They have created rare disease â€œbrandingâ€ that advocacy groups can use in their efforts. Global Genes also helps to bring media & industry to the table to work on the issues rare disease sufferers face. What began as a grassroots movement in 2009 with a few rare disease parent advocates and foundations has grown to over 500 global organizations.
Cure AHC President Jeff Wuchich, Vice President Bill Krenn, & Treasurer Todd Wagner have joined the Patient Advocacy Council at the request of Global Genes.
Jeff will also serve on the Corporate Council for Reimbursement to interface with industry on financially covering the myriad medical requirements rare disease sufferers face.
Check Orphan is a non-profit organization located in Basel, Switzerland and Santa Cruz, California that is dedicated to rare, orphan and neglected diseases. CheckOrphan offers users an interactive and dynamic platform for all these diseases. This strategy allows visitors to be updated daily on all the latest news and interact with people internationally.
Cure AHC will create content for this site as appropriate.
We will sponsor a page on this site as we are able.
The National Organization for Rare Disorders (NORD) is a federation of individuals and patient organizations providing advocacy, research support, educational services, and patient assistance programs on behalf of the rare disease community. NORD is one of the longest-running organizations standing as the collective voice of Rare Diseases. They have a wealth of resources for Patient Advocacy groups & lobby on behalf of the rare disease community. NORD supports innovative research, fair and consistent government policies, and access to medically necessary treatments.
Cure AHC will be joining NORD.
For the past 2 years Cure AHC President Jeff Wuchich has attended the US Conference on Rare Diseases & Orphan Products that NORD sponsors, and will continue to attend similar events.
Rare Disease Report is a website and weekly e-newsletter that offers an independent voice for the Rare Disease Community. It strives to bring together medical, scientific, investment, regulatory, and advocate professionals interested in rare diseases and orphan drugs.
Cure AHC is grateful for the coverage Rare Disease Report has provided thus far.
We will continue to keep them apprised of breaking research news & milestone events.
We will promote their site to others.
Hosted by trusted patient advocates, this is a place where rare disease patients can connect with others globally.
Cure AHC features this forum on our website, and we are actively promoting its use.
Cure AHC will share its events, blog posts, and stories as appropriate.
By growing the patient advocacy community & working collectively we can amplify our many voices to ensure rare disease patients are heard in State & Federal Government. RDLA provides:
- DC Office with workstation & meeting space for organizations to use when working in DC
- Consulting on legislative and grassroots strategies
- Online advocacy tools to contact Members of Congress
- Assistance with coalition building and support for legislation
- Coordination of Lobby Days & Congressional Caucus Briefings
- Conference calls/meetings to learn about legislation
- Clearinghouse of all legislation that affects rare disease patients
Cure AHC President Jeff Wuchich participated in the Rare Disease Day Lobbying Effort in DC this February, and will continue to do so annually.
Cure AHC supported & signed our names to an important letter on Essential Health Benefits that RDLA drafted.
Cure AHC will continue to promote RDLA action alerts and participate in other events as we are able.
Faster Cures Be it lack of medical breakthroughs, limited resources, or restrictive policies that are stalling progress, patients are paying the price in life or death consequences. At FasterCures, they work to clear the path to faster progress by educating stakeholders about the barriers, amplifying solutions that could pave the way to progress, and creating opportunities for key leaders to come together and get things done.
Cure AHC will be featured in their Time=Lives Campaign with video testimonials about the impact of AHC & the innovative work we are doing to push towards the cure
Cure AHC will participate in additional campaigns and workshops that Faster Cures creates as they arise and as we are able
Alternating Hemiplegia of Childhood is estimated to be a 1 in a million disorder. As there are only about 800 or so cases known in the world, there are potentially Thousands undiagnosed! Cure AHC is committed to working with our partners (and identifying additional ones as needed) to reach the undiagnosed patients in the world, to push the envelope on research, and to improve the quality of life for sufferers now as we “soar on wings of hope” to the Cure for AHC.
The AHC International Alliance is a portal showcasing the various associations around the world that are dedicated to alternating hemiplegia of childhood. The leaders of the various associations or their delegates meet periodically (usually once a quarter) to share updates and to collaborate on ways to work together to raise more awareness and funds for research. Cure AHC President Jeff Wuchich is the current moderator for the Alliance. You can find out more about the alliance, and find links to our sister associations, via www.ahcia.org