{"id":59333,"date":"2021-09-29T14:46:13","date_gmt":"2021-09-29T18:46:13","guid":{"rendered":"https:\/\/rarediseases.org\/rare-cancer-day-2021-brings-together-rare-disease-community-and-advocates\/"},"modified":"2022-12-02T08:14:35","modified_gmt":"2022-12-02T13:14:35","slug":"rare-cancer-day-2021-brings-together-rare-disease-community-and-advocates","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/rare-cancer-day-2021-brings-together-rare-disease-community-and-advocates\/","title":{"rendered":"Rare Cancer Day 2021 Brings Together Rare Disease Community and Advocates"},"content":{"rendered":"

Washington, DC,\u00a0September 29, 2021<\/span><\/b>\u2014<\/span>\u00a0<\/span>Tomorrow, the rare disease community will<\/span>\u00a0<\/span>celebrate the third annual Rare Cancer Day. Spearheaded by the National Organization for Rare Disorders (NORD\u00ae)\u00a0Rare Cancer Coalition\u2122, Rare Cancer Day is observed on September 30 to highlight the challenges patients face and to unify individuals living with rare cancers for awareness and early diagnosis.<\/span>\u00a0<\/span>NORD\u2019s\u00a0Rare Cancer Coalition<\/span>,<\/span>\u00a0composed of 27\u00a0NORD member organizations, was formed in 2017\u00a0to collaborate on issues facing the greater rare cancer community.<\/span>\u00a0<\/span><\/p>\n

\u201c<\/span>The Rare Cancer Coalition is proud to unite more than two dozen organizations working in rare cancers to collaborate, host important conversations and celebrate Rare Cancer Day<\/span>,<\/span>\u201d said\u00a0<\/span>John Hopper, Co-Chair of NORD\u2019s Rare Cancer Coalition\u2122 and President, Fibrolamellar Cancer Foundation<\/span><\/b>. \u201c<\/span>Together, let\u2019s continue to strengthen our community and its individual members through capacity building, networking, peer to peer mentoring and shared discoveries.<\/span>\u201d<\/span>\u00a0<\/span>\u00a0<\/span><\/p>\n

On\u00a0Thursday, September\u00a030\u00a0at 2pm ET<\/span>,\u00a0<\/span>NORD is hosting a\u00a0free webinar<\/span>,\u00a0<\/span>Rare Cancers: Breaking Down Barriers to Diagnosis, Treatment and Research<\/span><\/b><\/a>\u00a0<\/span>to explore rare cancer challenges and offer insights to assist those who are impacted.<\/span>\u00a0<\/span>Registration is still open! NORD is also asking the world to commemorate the day by using the #RareCancerDay hashtag on social media, posting messages of support for the community and sharing\/retweeting facts about rare cancers.<\/span>\u00a0<\/span><\/p>\n

\u201cRare Cancer Day is an important day for advocacy, fundraising and awareness of rare and deadly cancers\u00a0and the issues people living with them face,\u201d said\u00a0<\/span>Peter L. Saltonstall, President and CEO of NORD<\/span><\/b>. \u201cIncreasing awareness of rare cancer symptoms could lead to improvements in survival for individuals living with rare cancers. Members of the rare community, I urge you to tell your story, and together we can drive innovation to discover treatments and cures for rare cancers.\u201d<\/span>\u00a0<\/span><\/p>\n

Approximately one in five people living with cancer in the United States are diagnosed with a rare cancer. All pediatric cancers are rare. The five-year survival rate is lower\u00a0for patients with a rare cancer than for those diagnosed with a more common cancer. Efforts to increase awareness of rare cancer symptoms in patients and clinicians could lead to earlier detection and improvements in survival.<\/span>\u00a0<\/span><\/p>\n

\u201c<\/span>Rare Cancer Day is a celebration of the inspiring stories of patients, families and physicians, but so too is it a commitment to establishing a brighter future,\u201d said\u00a0<\/span>Jim Palma, Co-Chair of NORD\u2019s Rare Cancer Coalition\u2122 and <\/span><\/b>Executive Director,\u00a0TargetCancer\u00a0Foundation<\/span><\/b>. \u201c<\/span>Today is about awareness, action and a reminder of how much further we have to go to establish\u00a0effective\u00a0treatment options for\u00a0all\u00a0rare cancers.<\/span>\u201d<\/span>\u00a0<\/span><\/p>\n

Throughout the months of August and September, NORD has highlighted the\u00a0powerful,\u00a0important,\u00a0and inspiring\u00a0stories of the rare cancer community\u00a0<\/span>on our blog<\/span><\/a>.\u00a0<\/span>Rare Cancer Day\u00a0is\u00a0sponsored by\u00a0Foundation Medicine<\/span>.\u00a0<\/span>For more information on #RareCancerDay\u00a0or\u00a0to download\u00a0resources,\u00a0including a social media toolkit,\u00a0visit<\/span>\u00a0<\/span>NORD\u2019s website<\/span><\/a>.<\/span>\u00a0<\/span>\u00a0<\/span><\/p>\n

###<\/span>\u00a0<\/span><\/p>\n

About the National Organization for Rare Disorders (NORD<\/span><\/i><\/b>\u00ae<\/span><\/i><\/b>)<\/span><\/i><\/b>\u00a0<\/span><\/p>\n

The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases<\/span><\/i>\u00a0in the United States.\u00a0<\/span><\/i>NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical<\/span><\/i>\u00a0<\/span><\/i><\/b>research and providing patient and family services for those who need them most. Together with over 330 disease-specific member organizations, more than 15,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit<\/span><\/i>\u00a0<\/span><\/i>rarediseases.org<\/span><\/i><\/a>.<\/span><\/i>\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

Washington, DC,\u00a0September 29, 2021\u2014\u00a0Tomorrow, the rare disease community will\u00a0celebrate the third annual Rare Cancer Day. Spearheaded by the National Organization for Rare Disorders (NORD\u00ae)\u00a0Rare Cancer Coalition\u2122, Rare Cancer Day is … <\/p>\n

Continue reading “Rare Cancer Day 2021 Brings Together Rare Disease Community and Advocates”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[504,2754],"tags":[203,1712,2048,798,2046,2045,2849,796,414],"class_list":["post-59333","post","type-post","status-publish","format-standard","hentry","category-press-releases","category-voices-of-rare-cancer","tag-cancer","tag-fibrolamellar-cancer-foundation","tag-john-hopper","tag-rare-cancer","tag-rare-cancer-coalition","tag-rare-cancer-day","tag-rare-cancer-day-2021","tag-targetcancer-foundation","tag-treatment"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59333","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=59333"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59333\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59333"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59333"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59333"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}